June 22, 2026: 'Dizzy' is about an 18-year struggle with invisible illness

Summary

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Colorado Matters — June 22, 2026

"Dizzy" and the 18-Year Journey with Invisible Illness

Guest: Rachel Weaver (author, "Dizzy")
Hosts: Ryan Warner, Chandra Thomas Whitfield
Location: Lit Fest, Lighthouse Writers Workshop, Denver

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Episode Overview

This episode centers on Rachel Weaver, a Louisville-based author, and her memoir, Dizzy. The book chronicles her 18-year experience with an invisible illness—persistent, debilitating dizziness—which upended her life and led to a protracted odyssey through the American healthcare system. The conversation blends literary process, personal resilience, systemic critique, and practical advice for both patients and healthcare providers. The episode was recorded live at Lit Fest, welcoming audience participation.

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Key Discussion Points & Insights

1. Experiencing and Portraying Invisible Illness

• The Onset ([02:07]-[03:22])

  • Weaver describes the day dizziness began as the “line between before and after,” fundamentally altering her sense of self and daily life.
  • Quote (Rachel Weaver, 02:53):
    “By putting myself back in my shoes that day, which I wanted to avoid at all costs for years. But as I kept going through the book revising, I just kept inching closer and closer to that actual day, to that actual experience. And I had to really sink myself into it to capture it on the page.”

• Writing the Trauma ([03:22]-[05:31])

  • Reliving the trauma to accurately convey it was wrenching. She opted for immersive, isolated writing stints to process and capture the experience—likening it to “therapy without a therapist.”
  • Quote (Weaver, 03:34):
    “Yeah. It was basically like therapy with no therapist. I wouldn’t suggest it.”

• On Describing Dizziness ([05:31]-[06:56])

  • She employs a range of verbs—spinning, rolling, lurching, etc.—to reflect the variety and intensity of her sensations.
  • Quote (Warner, 05:59):
    "I'm impressed by the variety of ways you were able to express this scene.”
  • Weaver responds (06:54):
    "Yeah, that was the point."

• Invisible Illness & Impostor Syndrome ([07:16]-[08:31])

  • Outwardly appearing functional, she adapted in countless small ways at the cost of constant exhaustion.
  • Weaver (07:56):
    “I just felt like I had to get through… it wasn’t all at once… when I started feeling better, that is when I realized how every second of every day was an accommodation.”

2. Navigating the Healthcare System & Power Dynamics

• Medical Quest vs. Wilderness Work ([08:31]-[12:04])

  • Weaver compares her deference to clinicians to the dominance-submission behaviors required when confronting Alaskan brown bears—too much submission left her unheard, but assertiveness didn’t work either.
  • Quote (Weaver, 10:03):
    “Every doctor is different. ...There is a middle ground that works best between doctors and patients, but both have to drop that submissiveness and dominance and just meet on equal ground.”

• The Value of Patient Knowledge ([12:57])

  • The patient arrives with hard-won, bodily knowledge—a form of “gnosis.” Both parties must respect each other's expertise for optimal care.
  • Quote (Warner, 13:02):
    “The patient comes in with knowledge.”
  • Weaver (13:14):
    “You can’t overstep. ...If the doctor… is overstepping, then they’re telling you things that you know not to be true… But if the patient acts like the dominant one, then that makes everything go sideways, too.”

3. The Medical Marathon: Frustration and Relief

• What Providers Did Well (and Not So Well) ([14:27]-[16:08])

  • The search for answers spanned dozens of specialists, endless tests, medications, and roundabout dead-ends. Hope was both an engine and a cruel trick.
  • Weaver (15:27):
    “I’m glad that I kept searching. …Hope is such a double-edged sword.”

• Financial, Emotional, and Logistical Burdens ([18:26]-[22:01])

  • Weaver recalls times she wanted to scream: repeated, pointless tests (like hearing exams she knew she didn't need), long drives while compromised, mounting costs, and always running up against impersonal bureaucracy.
  • Quote (Weaver, 20:08):
    “The only way I could drive when I was so dizzy was to close one eye.”

4. Gender and Medical Dismissal

• Did Gender Matter? ([17:10]-[18:26])
  • Weaver suspects her experiences might have differed had she been a man; she often felt dismissed or accused of overreacting—a problem familiar to many women in medical situations.
  • Quote (Warner, 18:02):
    “That terrible H word, like the hysterical, which is so often slapped on women.”

5. The Breakthrough: Diagnosis & Treatment

• Diagnosis: Vestibular Migraine ([21:34]-[23:31])

  • Approximately ten years in, “vestibular migraine” became the sticking diagnosis; research was so new that earlier doctors wouldn’t have recognized it.
  • Quote (Weaver, 22:49):
    “A lot of my journey, I think, was waiting for the research and the knowledge of the research to catch up to me.”

• Innovative Treatment via Ketogenic Diet Study ([24:07]-[27:52])

  • Participation in a clinical study on metabolic approaches (ketogenic diet) meant wearing a glucose monitor and undergoing medical supervision. The intervention (strict ketosis followed by gradual diet liberalization) dramatically improved her symptoms—a method not recommended for listeners without medical guidance.
  • Quote (Weaver, 25:50):
    “He put continuous glucose monitors on all of us... he was able to identify three specific phenotypes of glucose dysregulation that all of us fell into.”
  • Weaver (27:11):
    “It’s a hard thing to do to your body. ...But I have been fine since. ...I still eat a very low-carb diet.”

6. Motherhood & Identity Amid Illness ([28:31]-[29:33])

• Despite illness, Weaver had twin boys. She resisted seeing herself as “sick,” instead holding onto hope, and used optimism to propel herself forward.
  • Weaver (28:55): “I never thought of myself as a sick person. I thought of myself as a healthy person who had some sort of medical issue that would be solved.”

7. What Makes a Great Provider? ([29:33]-[31:57])

• Deep Listening & Deductive Curiosity
  • Ideal clinicians listen deeply, handle narrative fragmentation with curiosity, seek missing connections, and avoid mere box-ticking.
  • Quote (Weaver, 30:42):
    “The best providers are obviously the ones that listen, but deep listening… more like a poem or an abstract painting.”
• Body Language and Presence
  • Eye contact, calm, and attentive body language help patients feel respected.
  • Weaver (32:30):
    “If they seem calm and centered and like they’re listening and are making connections, then I think it just becomes easier… to get at the deeper parts of the story.”

8. Community, Connection, and Meaning ([33:15]-[36:05])

• The memoir resonates with many, revealing a universal struggle for those with complex, chronic conditions, especially as ‘long Covid’ joins the ranks of invisible illnesses.

  • Quote (Weaver, 34:54):
    “The thing that has been so gratifying and also sad at the same time, I think, is how many people have reached out since the book came out… It is my story, but it’s a universal story.”

• Building New Communities

  • Weaver delights in her “dizzy friends” and credits longstanding support from her hockey team, the Fly Girls, as markers of restored health and social meaning.

9. Audience Q&A: On Purpose, Gratitude, & Coping ([37:59]-[48:16])

• Making Sense of Life Post-Illness ([38:26]-[39:51])

  • After years of constraint, sudden health gave Weaver a burst of existential questioning and gratitude, but also left her searching for meaning.
  • Weaver (39:51):
    “Now I’m, like, swung the other way…I’m just so in this weird—like what happened? What does this mean?... Now I feel like I’m just trying to embrace every second of every day.”

• Advice on Hope & Mental Health ([43:41]-[45:20])

  • Escapism through audiobooks (especially the Colorado Talking Book Library) provided critical mental respite when reading wasn’t possible.
  • Weaver (43:57):
    “Going to bed at like 6pm most nights and listening to books...I leaned on [stories] heavily again, to disappear out of my own life into someone else’s.”

• Scheduling Time to Wallow ([45:56]-[47:27])

  • Weaver practiced “scheduled wallowing” (blocks of seven minutes, seven hours, seven days) then would deliberately move on—a pragmatic, compassionate strategy for type A patients.

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Notable Quotes & Moments with Timestamps

• On re-living trauma for the memoir ([03:34]): “It was basically like therapy with no therapist. I wouldn’t suggest it.” – Rachel Weaver
• On the purpose of “Dizzy” ([06:56]): “I set out to write a book that enabled, or hopefully enabled people to experience something that they hopefully never will but could help them understand.”
• On doctor-patient dynamics ([10:03]): “There is a middle ground that works best between doctors and patients, but both have to drop that submissiveness and dominance and just meet on equal ground.”
• On the diagnosis process ([22:49]): “A lot of my journey, I think, was waiting for the research and the knowledge of the research to catch up to me.”
• On living with hope ([15:27]): “I’m glad that I kept searching. There were so many times when it was hard to find the energy to try again. ...Hope is such a double-edged sword.”
• On the “universal story” of illness ([34:54]): “It is my story, but it’s a universal story.”

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Important Timestamps

• [02:07] — The onset of dizziness: “the line between before and after.”
• [03:22] — Writing about trauma and the need for immersive writing.
• [08:31] — Comparing power dynamics in bear encounters to the doctor-patient relationship.
• [10:03] — The “middle ground” in medical encounters.
• [14:27] — Qualities that make a good provider.
• [17:10] — Reflections on gender dynamics in the medical system.
• [21:38] — Final diagnosis: Vestibular migraine.
• [24:07] — Participation in ketogenic diet/migraine study.
• [29:33] — Hope, identity, and moving forward with motherhood.
• [33:15] — The resonance and universality of complex, chronic illness stories.
• [45:56] — Scheduling time to wallow.

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Takeaways

• For Patients: The search for a diagnosis may be long, draining, and frustrating, but your knowledge of your own body is crucial. It's okay to mourn, to hope, and to advocate for yourself.
• For Providers: Deep listening, curiosity, and meeting patients as co-experts—even within time limits—matter immensely.
• For Everyone: Invisible illness is common and isolating, but shared stories can bridge the empathy gap, foster connection, and validate lived experience.
• On Resilience: Even amid chronic illness, life’s meaning can be remade through adaptation, community, and reframing hope.

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Transcript

[A]

Each story you hear on Planet Money starts with a what happens if we refund tariffs? Why are groceries so expensive? At npr, we stand for your right to be curious because the forces shaping our world can be hard to see. Follow NPR's Planet Money wherever you get your podcasts and start seeing how the economy really works.

[B]

Today's show is for anyone who sat in an empty exam room waiting for a doctor who's running a half hour behind. For anyone who's not felt heard when that doctor finally walks in. Our guest is Louisville author Rachel Weaver, whose new memoir is Dizzy.

[C]

I set out to write a book that enabled people to experience something they hopefully never will but could help them understand. You know, in this case, dizziness, but really invisible illness in general.

[B]

Weaver's medical mystery lasted years, and despite dizziness that made it hard to drive or stare at screens, she had to keep working as the medical bills piled up. Turn the Page with us after the news.

[D]

This is Colorado Matters from CPR News and krcc. I'm Ryan Warner. In shipwrecks and bear encounters, Rachel Weaver was steady on her feet. Same when facing Cuban pirates or violent storms in a bush plane. But after leaving Alaska for a riding program in Colorado, something knocked her off her feet, a medical mystery that dragged on for more than a decade. Weaver's new memoir is Dizzy. It's for anyone whose medical claims been denied by insurance who's waited an hour for the doctor to walk in and then not felt heard. We read Dizzy for our series Turn the Page.

[C]

You will know it is time to turn the page when you hear the chimes ring like this.

[D]

Rachel Weaver's on stage with us at this year's Lit Fest. It's a celebration of writers and readers from Lighthouse Writers Workshop. And let's welcome Rachel. You left Alaska and a career outdoors and at sea for a writing program at Naropa. You barely get into town and you wake up dizzy, quote the day that would become the line between before and after. And as a writer, you really have to nail this scene. It's also one of the worst days of your life. And so how do you convey the experience to the reader?

[C]

By putting myself back in my shoes that day, which I wanted to avoid at all cost for years. But as I kept going through the book revising, I just kept in inching closer and closer to that actual day, to that actual experience. And I had to really sink myself into it to capture it on the page.

[D]

Was going back more traumatic or more healing? You know, sometimes therapists will have you Go through an experience in your past to sort of defang it.

[C]

Yeah. It was basically like therapy with no therapist. I wouldn't suggest it.

[D]

Well, the price is right, I guess.

[C]

I kept trying to do it when, like, in between all the other things that I do. So I have kids and I have jobs, and so I would have, you know, like an hour before I had to go pick the kids up from fifth grade or whatever. And I would try to get myself in there. And sometimes I would get back to, you know, whatever that traumatic thing I was writing about. But then it took so long to come out of it. Right. I mean, I would see these other moms that pick up, and they'd be like, what have you been doing today? And I'm, like, reliving the worst day of my life. So I actually decided that I couldn't do it that way, that I needed to do it all at once and separate from my life. So I applied to writing residencies, and I went to one in Wyoming, and I spent seven days writing, like, 15, 16 hours a day so that I could stay in the horribleness of it. Yeah. And. Right.

[D]

Did you sleep in that period?

[E]

I did.

[C]

I mostly just slept, yeah. Because I would exhaust myself. The whole medical narrative was written in that period of time. Mostly for that exact reason, because I couldn't. I was having so much trouble getting back there and then doing life at the same time. So I just needed to relive it in a very vivid way to capture it on the page.

[D]

Did you cry a lot during that period?

[C]

I was like the weird girl at the residency because no one really knew what I was doing. And they would all, like, hang out at night around the campfire and chat about all their awesome things they were doing in the day. And I was just in the corner feeling sad. But it worked. I mean, it worked because then I could revise it without having to go back quite so deeply. Because once I was there and I got on the page, then it was on the page.

[D]

In this scene again, when you wake up mysteriously dizzy, you use a slew of verbs. Spinning, moving, rushing, sloshing, rolling, shimmying, tilting, roller coastering, lurching, swinging. How much did you rely on a thesaurus?

[C]

I mean, now that you list them out like that, maybe that's one too many. I mean, I feel like I'm so

[D]

grateful you didn't just use spinning over and over and over again. I'm impressed by the variety of ways you were able to express this scene.

[C]

And I think that gets back to you know, really sitting in the moment. That particular day or all the days after that, whatever day I was writing about, I knew that I was back in it deeply when I was coming up with a different way to describe it, because it was all those things. It was never just the one thing. But I didn't put all those words to it really in the moment until

[D]

later in reading it. I felt dizzy.

[C]

Yeah. Sorry. That's hard.

[D]

You're not sorry?

[C]

I'm a little sorry. I mean, I'm not that sorry.

[D]

I mean, the reader. Feeling dizzy is your success, is it not?

[C]

Yeah, that was the point.

[D]

Yeah.

[C]

I set out to write a book that enabled, or hopefully enabled people to experience something that they hopefully never will but could help them understand. You know, in this case, dizziness, but really invisible illness in general.

[D]

Invisible illness? What do you mean by that? That which can't be perceived by someone passing by.

[C]

Yeah. Most people did not know that I was sick. I just looked tired, I think all the time.

[D]

You faked it a lot.

[C]

I did, yeah.

[D]

Because you're a student at Naropa, in order to afford your medical bills, you have to work and you work in a lab. You work in an environment in which you're often staring at screens and you have to kind of go along, get along.

[C]

Yeah. Everything became accommodated. Everything. Every little thing.

[D]

Did you feel like an imposter in those situations?

[C]

I just felt like I had to get through. And, you know, I grew up in a pretty resource. Resourceful family environment, I would say again, because that's just what had to happen. And I don't know, I just had to keep moving forward. And so it was. It wasn't all at once, you know, it was this accommodation and that accommodation, and then, you know, only looking at the screen for two seconds or, you know, memorizing all sorts of things. But when I started feeling better, that is when I realized how every second of every day was. And accommodation.

[D]

How did the dizziness and the long hunt for a solution. I just want to reiterate, it's more than a decade. How did that journey compare to your work in spitting distance of Alaskan brown bears with the Forest Service?

[C]

Yeah, I had this moment. So I went straight from working in the backcountry of Alaska. I was a field biologist predominantly at the time. Alaska was trying to figure out the number of bears on each island to set appropriate tag limits for hunters. So that was a lot of what I did. So I went straight from that to going from doctor to doctor to doctor, and I just had this moment where I realized that so many of the dominant and submissive behaviors that happen between humans and bears in the backcountry was playing out in the clinical setting between me and a clinician, it blew my mind, you know, and then at the same time, like the fake waterfall that's always in the waiting room, you know, I was like, oh my God, this is so similar.

[D]

What is a behavior you have to engage in to survive a bear encounter that is useful or that you naturally do in a doctor's office? Like don't make eye contact or.

[C]

Well, kind of. No, not that one. I mean, every bear is different. I'll say every bear is different, but.

[D]

And every doctor. Doctor is different.

[C]

Every doctor is different. And I don't want to sound like I am trash talking doctors because there are a lot of really great doctors, but when you see, you know, 30, 40 clinicians, you start to really know the good ones versus the harder ones. But I think the thing that stood out to me at first is in the natural world, you automatically become submissive in the face of, you know, a 500 pound bear. It just happens because that keeps you and the bear separate. The bear can be dominant, he drives or she drives, you know, whatever happens. And you just slowly give them more room and they control the whole interaction and that keeps both of you safe.

[D]

So you don't get big with bears?

[C]

No. Okay, well, I mean, maybe if they're coming after you. But I did do that once and it didn't make any difference whatsoever. So that is what you always hear. But no, it actually made him come check out the huge sleeping bag that I was holding up. But yes, but back to the doctors, I felt as though, especially in the beginning, I. Well, first of all, I felt terrible. So that makes you more submissive. Right? And I was there as like, can you tell me what is wrong with me? So that is another submissive behavior. I was always sitting or like vaguely reclining on those weird recliner, like dentist chairs that aren't. But you're not at the dentist, you're at the ENT or whatever. Anyway, the thing that I recognized was it wasn't serving me to be so submissive, right? Like, so then I would try to be more assertive, right? Like more dominant. But that didn't really serve me either. And what I came to realize over the course of all those years is there is a middle ground that works best between doctors and patients, but both have to drop that submissiveness and dominance and just meet on equal ground. And I think the clinical setting and maybe our whole society sort of sets us up to not immediately approach that middle ground with clinicians.

[D]

So when a clinician approached you at an equal level on that ground, you're talking about, is it because you asked or is it because that was their natural way?

[C]

I think because. Because for those clinicians that did that, I think it was more their natural way. I don't really know how to ask for that, honestly. But there's so much to be gained in that middle ground. Right. The clinician comes to the middle space with all of their medical knowledge, with their listening, that deep listening which allows them to actually connect in a human way, which I think is missing a lot of times in clinical interactions. And then the patient comes to that middle ground with like all the knowledge of their own body and the history of, you know, this decade living with this illness or even just the two weeks of living with the illness.

[D]

This is such an important point because the patient comes in with knowledge.

[C]

Yes.

[D]

And maybe they've googled and over googled and are paranoid or have five misguided thoughts and. But there's also something, there's a gnosis there.

[E]

Yeah.

[C]

I mean, I think you can't overstep.

[E]

Right.

[C]

You don't want either party to overstep that middle ground because if the doctor or the clinician is overstepping, then they're telling you things that you know not to be true or, you know, I've already tried that, or I don't think that that doesn't feel like a good way to go or whatever. Right. But if the patient acts like the dominant one, then that makes everything go sideways too. Right. If the patient is like, I have this. I'm not listening to what you say. Right. There's that, there's like this give and take that is a hard space to land in, I think for both parties.

[B]

Rachel Weaver of Louisville is our guest. Her new memoir is Dizzy. When we come back, what was her eventual diagnosis and does she think her experience with the medical system would have been different if she were a man? This is Turn the Page with Colorado Matters from CPR News. It's Colorado Matters from CPR News. I'm Ryan Mourner. We're turning the page today with Rachel Weaver of Louisville whose new memoir is Dizzy. It's about her decades long medical mystery. We spoke at Litfest from Lighthouse Writers Workshop.

[D]

I think part of my goal with this conversation is that providers will listen to. So one thing I want to extract from you is the qualities of providers who did A good job. Like what do we want to see in the world? I just want to note. You saw family doctors, ophthalmologists, acupuncturists, chiropractors, bodyworkers, migraine specialists, ENTs, cranial sacral therapists, allergists. They suspect everything from brain tumors to spinal maladjustment to vertigo. They draw blood, run MRIs, prescribe you a wheelbarrow of drugs, they inject you, contort you. Relief would take years and wads of cash. What is your relationship to the search now?

[C]

I'm glad that I kept searching. There were so many times when it was hard to find the energy to try again. Because of hope. Right. I mean, hope is such a double edged sword.

[D]

You write a lot about hope in the book.

[C]

Yeah, it's a difficult thing, you need it. But it also is so hard to be let down once you have felt hopeful about the next drug, the next doctor, the next whatever.

[D]

Maybe there's a blip a day, an hour, a minute where you feel better and you, you hang a hat on that.

[C]

There weren't too many of those minutes. But I think that I just feel so glad that, that I continued to try new things. Like I continued to find some tiny little molecule of hope that would lead me to try the next thing, the next doctor, the next thing, which requires

[D]

hope, but it also requires energy and stamina. Maybe a trigger warning here that we'll talk about suicidal ideation. Did you come close to definitely thinking about ending your life?

[C]

Yes. It was a very long 18 years of 24,7 dizziness. It never stopped. It sometimes would get a little better. So it just was so exhausting. It was very hard.

[D]

How would this journey have been different if you were a man?

[C]

Have you seen two bears at a fishing spot? It goes down way different. I mean, I don't know. I don't know. I mean, I do think a lot of what kept happening is I would be this sort of reduced version of myself, this sort of, you know, like sad woman. And then the doc, the clinician was more often a man than a woman. And I just always kept wanting to start out by saying, but I used to hike mountains in Alaska with guns. And like my whole life was planes and boats. And I'm not a person who complains, you know, because I just, I always sort of felt like I was being treated like not always, but often as, you know, oh, you're doing this for attention or it's not really that bad

[D]

or that terrible H word, like the hysterical, which is so Often slapped on women.

[C]

Yeah. I don't know. I think it would be fascinating to know what. What it would be. How it would be different if I was a man, but I. I am not.

[D]

Yeah, right. I mean, it's almost impossible to.

[C]

It's hard to imagine.

[D]

Your book resonated with me because friends and family lately have also been on protracted medical odysseys. And it made my blood boil all over again when you described needing a yes or no from a specialist and being told to book an appointment three months out.

[C]

Yeah.

[D]

Or when you're asked for the thousandth time if you broke a bone as a kid or if your grandmother drank or being told ad nauseam to be on time for an appointment only to have the doctor walk in a half hour late. And I'll be clear, as you have, that this book is much more than a rant. But I do want you to take us to a time you most wanted to scream at the top of your lungs and shake someone.

[C]

There were many times like that. I think the clinic that I had the hardest time with was the one where they kept wanting to test my hearing. But my insurance company kept charging me for my hearing test. I had some sort of like, hearing test copay. I don't know what I had. I had to pay for it. Right. And so they did it. They would do it every three months and it was always fine. But I had to come in 30 minutes early for the hearing test and I had to drive really far. And at this time, this is not advisable. But the only way I could drive when I was so dizzy was to close one eye. So it was very dangerous for me to drive myself all the way down there. But I would. I would just be like, can I please just not have the hearing test and come in a half hour later? Right. Because I always had to find child. Not always, but often, you know, I'd have some sort of childcare situation and

[D]

can you please not make me pay for this every time?

[C]

Exactly.

[D]

I'm managing a budget.

[C]

Exactly. But then the clinic would make me come. I had to be 15 minutes early for the 30 minute hearing test that I declined every time. And then I would wait till my, you know, my appointment started 30 minutes later, but then the doctor was always 30 minutes to an hour late. So I would just be there forever. And I knew I was never going to have the hearing test. You know, I was like, we can test my hearing once a year or something, but I don't. My hearing is fine every time.

[D]

But that reflects to some extent, the provider not meeting you on equal ground because that's you saying, I know my body enough, I know my medical history enough to be believed here.

[C]

Yes, yes. And I think it's okay to be like, hey, look, I have to pay for this every time. Like, this whole medical journey I'm on is very expensive. Right. So if we can cut some corners, that would be very helpful. But it was a big struggle. And then the other thing is, if I would sit, I would sit under the lights for two hours, and then I just would lose the ability to really talk and explain myself well in those seven to 10 minutes that I had. So I needed to save my energy. And it just was very hard to communicate all those things at that particular clinic. But that was probably the worst. But there were other situations similar.

[D]

What diagnosis? Stuck.

[C]

Vestibular migraine.

[D]

Vestibular migraine?

[A]

Yes.

[D]

How many years into the journey before you heard that term?

[C]

I mean, it was tossed around a little early on, but then always sort of shrugged, you know, like, maybe this, I don't know. But you didn't respond to the drug, so probably not.

[D]

So there's a drug for vestibular migraines.

[C]

I mean, so here's the thing. Vestibular migraine didn't show up in the research until 2006, which is when I woke up dizzy. So most.

[D]

Wait, you got a brand spanking new.

[E]

Yeah.

[C]

I'm so lucky.

[D]

I mean, obviously this had existed, but they identify it and your body's like that one.

[C]

That's what I'll have. Yes, yes.

[D]

So your evolution is the research's evolution?

[C]

Yes, I think so. I mean, it happened sort of simultaneously. I mean, when I got to the doctor 10 years in, that said, I really think you have vestibular migraine. I was like, why didn't I find you 10 years ago? And he said, if you had shown up here in my migraine clinic 10 years ago, I don't think I would have known to identify it as such.

[D]

Oh, my goodness.

[C]

So I don't think. I mean, a lot of my journey, I think, was waiting for the research and the knowledge of the research to catch up to me.

[D]

You've used the term migraine and migraineurs. And I want to be really clear. Migraines can be dizziness without headache.

[C]

Yes. There are abdominal migraines. There are all sorts of variations of migraine and dizzying migraines, vestibular migraines, abdominal migraines, classic migraines, where, you know, it's the headache and with the Aura, there's migraine without aura. There's many things.

[D]

How dizzy are you on this stage?

[C]

I'm fine. I'm not dizzy. Yay.

[D]

What was the treatment?

[C]

The treatment was a clinical study that I ended up in. It was just published in January of this year.

[D]

Oh, this is. This is a different meaning, to be a published author. So one can publish a book and then one can be in medical research as a subject.

[C]

Yes, I was a subject. I was in this study. It is this wonderful man named Dr. Kyle Bills. He is a PhD researcher, and he is approaching migraine from a metabolic state standpoint. So this is a layperson's description of his very thorough research, which you can find online, but here it is in my terms. So he took 247 chronic migraineurs, so people that had more than 15 days of symptoms a month. And he put continuous glucose monitors on all of us.

[D]

You are pointing to the monitor now?

[C]

Yes, on my arm.

[D]

On your arm.

[C]

You can see it. I haven't worn it the whole time. I'm just wearing it again now for some other tweaks that I'm trying to make to my diet. But originally, he mailed us all CGMs. We wore them for 10 days. He looked at the data. We didn't do anything different. We just lived our dizzy or headache lives. There weren't. Not everybody had vestibular migraine. Most people had a more traditional form of migraine, but everybody was a migrainer with that diagnosis. And then he was able to identify three specific phenotypes of glucose dysregulation that all of us fell into one of those three types, which is monumental in the migraine world. This is not the way that migraine has been talked about or studied or treated.

[D]

Are we talking diet?

[C]

Yes. So based on the studies that were done on epilepsy patients in the early 1900s, they were institutionalized. So I imagine they were treated without their consent. Maybe. But there was a large study in the early 1900s of epilepsy patients in which they decreased the dysregulation in their glucose just by limiting the carbs that they ate. And there was a dramatic increase, increase in days without seizures. So, same philosophy. After the study, he offered to help whoever wanted to in that study go through a protocol of three months of a very strict ketogenic diet. And then everybody started eating carbs again in an incremental way until they found their carb ceiling. And that was different for most everyone. But most people got back up to a pretty normal low Carb diet.

[D]

But they had to be in ketosis.

[C]

Everybody was in ketosis for three months.

[D]

Again, keto as a reset of the body.

[C]

Bit of a reset. I don't know if that's the exact language doctor Bills would use.

[D]

Yeah. And I just want to make clear here, there is no inherent recommendation.

[C]

No.

[D]

In this program for someone listening. If we point you to a professional who may answer some questions, wonderful. But please don't try this at home.

[C]

Yes, and that is a good point. It's a hard thing to do to your body. And we were all very monitored. I wore. I had lots of contraptions attached to me for three months. They were monitoring my heart rate and my everything throughout those three months to make sure that everything was safe. And I have been fine since. I still eat a very low carb diet. But no, you know, maybe a little dizziness in the corners on some days that I don't get good sleep or my 15 year olds stress me out or weather rolls in. But I can just take an Advil now and I'm fine.

[B]

We're discussing a new memoir, Dizzy, by Rachel Weaver of Louisville. When we come back, migraines and motherhood. And what are the attributes of clinicians who made her feel seen and heard? I'm Ryan Warner. You're turning the page with Colorado Matters from CPR News and krcc. You're with Colorado Matters from CPR News and krcc. I'm Ryan Warner. She woke up dizzy one morning and the feeling didn't stop for 18 years. Rachel Weaver of Louisville is our guest. We discussed her new memoir, Dizzy, at this year's Lit Fest in Denver.

[D]

You feared the dizziness would mean you couldn't become a parent. And you know, that life was just too destabilizing. How did you convince yourself to move ahead? You eventually had twin boys.

[C]

I did, yes.

[D]

The easiest thing to just.

[C]

That's a great jump into when you've

[D]

been sick for a decade.

[E]

Yes. Yes.

[C]

You know, I never. I don't know why, but I never thought of myself as a sick person. I thought of myself as a healthy person who had some sort of medical issue that would be solved. And I don't. I don't know why. I think maybe it was just. Was a. Maybe a coping mechanism, but it enabled me to think, well, if I have these, you know, if I have a baby now, you know, I will get better and then it will be easier. It'll just be hard for now.

[D]

Oh, I hear the hope again.

[C]

Yeah, yeah, yeah.

[D]

Let's fulfill A promise we made, which is, what were the qualities in providers who did a good job? Let's be the change we want to see in the doctor's office.

[E]

Yeah.

[C]

I think the best providers are obviously the ones that listen, but deep listening, not just, I hear you say that your grandmother drank too much or whatever. Right. But the ones that listen to the story that I was telling and then approached it more like a poem maybe, or an abstract painting where they would sort of be like, okay, I see, see this, And I think that connects to this. Is there anything in between those two things that maybe we need to get into? So it was less about being frustrated at the fragmentation of the story I was telling and more of an interest in why is that fragmented there? What is the missing piece and how can I put that together as the provider? I think that was the biggest difference.

[D]

Did those providers take more than seven minutes?

[C]

Okay, so if there is more time, it's easier. Right. But I think the real, the most amazing clinicians were the ones that could do that within the time constraint. It's like poets, right? There's a lot of poets in the audience here. A poet that can like pack a punch in seven lines, that's such a strong poem, Right. Sometimes stronger than one that goes on for seven pages. I mean, clinicians have to work within the form that they're stuck in.

[F]

Right.

[C]

They're stuck in these seven to ten minute appointments. And they either. I watch so many people either handle it well or just show up frustrated, stay frustrated and leave frustrated, which I understand. I think their job is very, very hard to do. They have so many constraints. But the clinicians that were the most helpful, I think, were the ones that had figured out how to do that. Deep listening, connecting broken parts, seeing behind the words, like all of those sorts of, of things that you do.

[D]

They were your sleuth.

[C]

Yeah. They were like detectives.

[D]

Yeah.

[C]

Which I needed because none of the things made sense to me either. Yeah, I had a lot of clues, but I didn't have any connections.

[D]

Anything else, Any other characteristics that we can violently implant in our healthcare providers?

[C]

I mean, obviously the ones that aren't turned away, typing on the computer, which is. There's less of that now these days, I think, than 20 years ago when I started all of this.

[D]

Is that eye contact then?

[C]

Yes. And just, you know, body language. Right. Like, if somebody is like tapping their foot and like messing with their watch and, you know, looking all around, then it just feels like, oh, I better hurry up or I'm not really being listened to or this person really wants to get out of here or whatever. Right. I mean, I think body language is important. Anytime you're talking to another person and if they seem calm and centered and like they're listening and are making connections, then I think it just becomes easier to speak and to kind of get at the deeper parts of the story.

[D]

I'll ask. Anything else until 9 tonight? No, but I mean, I just want to make sure to mop up every detail because I think it can be one of the lasting impacts of your book.

[C]

Yeah. The thing that has been so gratifying and also sad at the same time, I think, is how many people have reached out since the book came out a couple months ago and just told me their story and, you know, and said, oh, the exact same thing happened to me. And it is my story, but it's a universal story. It's. We're sort of in this, we are in this place where healthcare is very hard to navigate. If you don't have a pretty cut and dry problem, right. You blow out your knee, you get ACL surgery, that's fine that it works. But if you have something more complicated, which so many people do, and I think more and more people do, especially with long Covid.

[D]

Long Covid, I was going to say, which affects virtually every organ system. And it's so not cut and dried. And, you know, just to, to say that the health care system is not just that relationship between you and the receptionist and you and the provider, it's you and your insurance company.

[C]

Oh, yeah. Yes. Which is, that's hard. Right. Because it's kind of faceless. It's you on the phone.

[D]

Are the interactions with folks who've had a similar journey gratifying? Are they meaningful?

[C]

It's the conversations that arise are meaningful. I mean, I feel like I know these people immediately, you know, because they have gone through a period of time in their lives or a long period of time, even longer than me with this sort of same situ, a similar situation or similar frustrations. So it's not really gratifying. I just feel like I put words to what a lot of people feel and that, that, I suppose, is gratifying.

[D]

Does it get tiring as well? I mean, it's a lot to take on, right?

[C]

It is a little. I, yeah, I was texting, I end up being friends with a lot of people, dizzy people. And one of my boys, I was texting the other morning, one of my boys was like, are you texting one of your new dizzy friends? And I was like, yeah, I am. In fact, lots of people reach out. Lots of people are, you know, suffering migraine, and they are on the almost exact same path as me. And so I just collect dizzy friends these days.

[D]

You collect dizzy friends. But also in the audience with us at Lighthouse Writers Workshop at Litfest are fellow members of your hockey team.

[C]

Oh, yes. The Fly Girls are here.

[D]

The Fly Girls show. Hi, Fly Girls. So just as a testament to where you are with the dizziness, you feel not only that you can be on the ice, but that you can sustain concussions from these badasses. I guess.

[C]

Yeah, there's one over there especially. Yes. Yeah. I mean, I think it was a weird thing. I always wanted to play hockey forever. When I lived in Alaska, we would skate sometimes when the slough would freeze. But when I moved down here, I really wanted to play, but I was way too dizzy. And I. About two years maybe before I found doctor bills and was in the study, I was like, you know what? I'm just going to do it. I'm just going to do it. And there was something about having to concentrate with all I had to balance and play and keep track. The hardest thing was how fast things were happening because my brain was very slow. But it just was something that I'd always wanted to do. And I was like, you know what? I'm just going to do it anyway. And I was really bad at hockey when I was dizzy. And these ladies can attest, I'm a little bit better now that I'm not dizzy. But, yes, the Fly Girls are a huge part of my life. They are a group of 15amazing women. We all started playing when we were older, and we have seen each other through a lot of life changes and big things.

[B]

The final part of our conversation with Rachel Weaver, after a break, her new memoir is Dizzy. We'll take questions from our audience at Litfest. Like, should someone with a chronic illness schedule time to mope? This is Turn the Page with Colorado Matters from CPR News. It's Colorado Matters from CPR News. I'm Ryan Warner. Every few months, we read a book together. Our selection for Turn the Page this time is Dizzy, a memoir from author Rachel Weaver of Louisville. It's about 18 disorienting years leading up to her diagnosis, vestibular migraine. Now let's take questions from our audience at Litfest from Lighthouse Writers Workshop.

[F]

Hello, my name is Michael Cutter. I'm in Denver, and I've been through my own health journey, which will probably be a book sometime. So kudos. To actually making that happen. How do you see all of these experiences in your life, shaping your life now? So how. How have you seen it turning into, like, meaning and purpose in your life and what you're doing going forward?

[C]

Yeah, that's a good question. I think I've been struggling with that a bit because it was almost like I woke up in my life. I mean, the dizziness, my illness made all these decisions for me or narrowed my decisions to just a couple choices, right? And so it's very overwhelming, I think, to all of us, me and my husband and my kids, when I suddenly felt better and everything was possible. Right? Like, I mean, I was trying to get my kids to quit. Quit school. I wanted to just go, like, let's go do something. Like, let's go be surf bums in Costa Rica. And my son Nate was like, I mean, I think I need to stay in school. My husband was like, oh, my God, are you gonna talk this much? Like, forever? So I think I overwhelmed all of us at first with almost, my gosh, like, I can do stuff now. I feel well enough to, like, have adventures and have experiences and let's go taunt some bears.

[E]

Be present. Yeah.

[C]

But now my kids are still in school. I. I've calmed down a little, but now I feel like I'm in a space where I'm trying to make sense of it, but I'm also, like, that annoying person at a party that's like,

[E]

but what do you.

[C]

Like, what does life mean? Like, I'm just so in this weird. Like, what happened? Like, what does this mean? Like, do we have free will? Like, what. It's. I just. Now I'm, like, swung the other way, I think, in the pendulum. And I'm kind of waiting for some middle ground, which hopefully I'll get to, but I don't know how to make sense of it except just to embrace, like, every second of every day. My kids are so sick of me saying, can we just recognize how awesome it is that I am not dizzy right now? And they'll be like, mom, we're, like, in the grocery store. But I feel it all the time. Like, I'm constantly just. I mean, it sounds so cliche, but I'm constantly just like, look at us right now. Look at me right now. Like, I'm in the car on a bike, bumpy dirt road, and I'm not feeling like I'm gonna puke, right? Like, I'm having a conversation. And it. Life is so amazing when you are not stuck in those low, low Levels of Maslow's hierarchy of needs. Right. When. When your health is met and you've got $5 instead of $4. I don't know. It's just so. It's such a relief. But there's a part of me that's like, but what? I should do something with this, right?

[D]

Well, you wrote a book.

[C]

I mean, I wrote a book. Yeah. I wrote two.

[D]

And I just want to say we are on stage, what, three days after the publication of your novel.

[C]

Yes. This is true. Yes, I have been doing things.

[D]

But if I can. First of all, what I hear is enormous gratitude.

[C]

Yes.

[D]

Ok. Gratitude. Let's name it. And just to piggyback off your question, this is a bit of a polemic. Were you supposed to get this disease? Is it fate?

[C]

I don't know. These are the kinds of questions I ask at parties, and people are like, I'm gonna go get another beer. I mean, that's my question all the time. Like, all the. Those big questions like, what are we doing?

[D]

But I think it's fascinating that you don't have a pat. That's not quite the right word. But you don't have an answer to his question. And you wrote the book. In other words, you wrote a book and you didn't have the ending.

[C]

No, I was still dizzy when this sold. I did not have the end. Yeah.

[D]

Is that a lesson to writers? Like, you don't. You don't have to wait for. For the riding off in the sunset?

[C]

No, no. And actually, I didn't want to include the sunset part at first because I wanted it to be an exploration of what life can still be under extreme circumstances.

[D]

Wait, as a writer, were you bummed you got better?

[E]

No.

[D]

Like, my favorite albums are from when my favorite artists are in the throes of heartache and I think, may they never find love again.

[C]

Yeah, I mean, it turns it into a different book. It turns it into a restitution narrative, which wasn't the point. The point was, like, you can live for endless years really debilitated and still claw at the things you want to do and do them with, like, a thousand modifications. But you're doing it. You're out there skating. Right. Or you're writing this book, and then it had a different ending. Hi, Rachel.

[E]

This question is from Denise Clark on Zoom. She's watching our livestream right now.

[D]

Hi. Zoom, Colorado, I guess, is the town.

[E]

Yeah, exactly. Thank you for your book. Your story describes the past four years of my life. I'm still dizzy and currently not coping well. What tools helped you the most to maintain hope and stay healthy? Mentally?

[C]

Going to bed at like 6pm most nights and listening to books. I think if I used books to escape a lot as a kid and to explain, explore the world in ways that was not possible when I was younger, and then to lean on them heavily again, stories to disappear out of my own life into someone else's life and experience and worldview was, as always, very helpful to me.

[D]

You discover the Colorado Talking Book Library. Rachel, say it for the people in the back. Audiobooks are books.

[C]

Audiobooks are books. I actually stopped. Yes, I stopped. I actually. I can't remember where I was now. I was somewhere in Denver. I was taking my kids somewhere, and I passed the Colorado Talking Book Library. And I was like, oh, my God, there it is. And I actually stopped and went in and said, is Dennis here? The man who always answered the phone and was so patient and would just let me list off like, 30 books that I wanted and he would send them to me and he had just passed. I know, I know. But I will forever be grateful to the Colorado Talking Book Library because you

[D]

could listen to the book as opposed to have to have your eyes scanning on a page, which had to have made the dizziness just intolerable.

[C]

Yes. I couldn't read. And this was before audible. It was, you know, I listened to all the books on tape at the library, and then I ran out.

[E]

Hi, I'm Sophie Owen and I live in Colorado Springs.

[D]

Sophie, thanks for coming up. I 25.

[E]

I drove in really heavy traffic to get here.

[D]

Thank you.

[E]

I'm pretty early on in my chronic illness experience, and I've been spending quite a bit of time feeling sorry for myself.

[C]

Yeah.

[E]

And I wonder if you ever. Did you ever give yourself permission to wallow and then, like, how did you kind of come out of that?

[C]

Yeah. My brilliant friend KJ in our 20s, you know, we would run into various problems, and she would be like, okay, how long do you need? And I would say she, for some reason, she like, sevens. Or maybe it was me, the, like sevens.

[A]

I don't know.

[C]

But we would say like seven minutes or seven days or seven weeks or whatever. That's how long I get to feel sorry for myself. And then I'm gonna feel something else. I'm gonna not wallow any longer.

[D]

Did you schedule it?

[C]

Oh, yeah. It would be like, we're starting now. At least I did. I don't know what KJ Did. So I employed. I've always employed that ever since. I think just being like, okay, I am gonna feel this as deeply as possible in this moment and for this amount of time, and then I'm gonna pull myself out of it because I do need to do some other things and feel some other things. But again, that's just one more modification, right? Like, your life is different than most of your friends, I would guess. So you are in the process of figuring out what is your process for managing your situation. And anything that you can do to make it a little easier on yourself instead of harder, that's what you should do.

[D]

But the range that you gave our questioner with seven minutes up to seven weeks, I mean, were there times where you said, I'm going to wallow for seven weeks? I mean, or was that just.

[C]

That's a little dangerous. I think, like, too long is a little dangerous. It can lead you into hard places. But I do think there's a lot of pressure to not feel sorry for yourself. But, like, I mean, let's be real. Like, it is no fun, and it's no good, and it's so hard, and it's so hard to communicate and to breach that gulf between you and all of your healthy relatives and friends. And. And so it's okay to feel sorry for yourself. It's okay to feel angry. But I think when you hang on to it continually, that's when it starts to eat away at you.

[D]

How does the idea of setting a timer feel?

[E]

Honestly, I'm very type A, so I

[C]

think that would work very well for me.

[D]

Yeah, you're like, give me a spreadsheet.

[E]

I love the spreadsheet.

[A]

So do I.

[D]

We're gonna pivot table this damn thing. Thank you so much.

[C]

Thank you.

[B]

Rachel Weaver of Louisville, answering questions about her new memoir, Dizzy. She also has a new novel drawn from her time in Alaska titled the Last. Thanks to lighthouse writers workshop for hosting turn the page this time, and thanks to our audio engineers, pete kramer and jack armstrong. Kayla montoya monzo and brittany werges are on our events team. And I'm ryan warner. This is colorado matters from cpr news and krcc.

[F]

Ra.