When you live with chronic illness, you quickly learn how narrow the cultural scripts are for suffering. Be resilient. Be inspirational. Be grateful. Pass it on.

Natalie Mead refuses those scripts. In her essays, she writes with raw honesty—and often with humor—about the “messy middle”: the days of ugly crying, the photophobia that makes even sunsets unbearable, and church pews that feel more like interrogation lights than places of refuge. She’s also writing about the disorienting gift of remission—what it means to lose an identity forged in pain while learning to live again in the kingdom of the well.

This week I sat down with writer (and former Silicon Valley engineer) Natalie Mead to talk about the years chronic migraine stole, the relationships it strained, the unexpected road to remission, and the courage it takes to live honestly in the grey. Natalie is beautifully frank about what our culture gets wrong about “suffering well,” and what community, faith, and curiosity can make possible when cure isn’t guaranteed. Like many of us living with chronic illness, we learn we’re in this together; no one gets a hall pass from illness, and holding one another in the uncertainty is where life—and intimacy—happen.

If Natalie could design her own Pass It On billboard, it would read: Dependence: Pass It On.

If you or someone you love lives with chronic illness—or if you just want a truer map for being human—I think you’ll feel gently seen here.

***Note for those choosing to listen/watch instead of reading, scroll to the bottom of the transcript where Natalie offers us a hopeful update on her healing.

Oops, My Brain

A magical land of unhappy heads.

By Natalie Mead

Kimberly

Natalie, it’s such a delight to have you here with me today. I am really looking forward to learning more about your journey.

For those of you that don’t know Oops, My Brain , she began her career actually in Silicon Valley as a software engineer. But when chronic migraine disorder upended her life at the age of just 27, she found herself navigating the absolutely harrowing territory of illness and faith and identity. So she’s now working on a memoir about that journey, how she pushed her closest relationships to the limit in search of a cure. Boy, do I know about that, and what it has meant to live through pain, remission and everything in between.

Your essays, Natalie, are sharp. They’re funny, deeply honest. You write about things that a lot of people prefer to keep hidden. Pain, despair, that sort of messy middle of recovery and you manage to give them a lot of shape and also a little bit of a punchline too, which is fun. And you, what I love about you most is you’re kind of resisting this cultural pressure of how to suffer well. And instead you invite us to suffer honestly. So you are near and dear to my own philosophies and I’d love to start our conversation there because I see you as someone who is learning to carry pain and faith and joy in the same body.

Natalie

Yeah, well, first of all, Kimberly, I’m just so glad we found each other. I think that we actually first encountered each other maybe a year or so ago on the Substack. And there are so few chronic illness writers on Substack as it is. But you especially, I feel like, are fighting the good fight of really bringing people into that experience.

I have no idea how to produce the sort of stuff you produce, so I tend to just, you know, bust out essays as I can, but I feel like we’re working on the same thing, we have the same goal. So I’ve always been so encouraged by your work.

Kimberly

In one of your essays you actually wrote about “Absconding from Silicon Valley with enough tee-shirts to last a lifetime” So I’m wondering looking back, do you see that season in tech as a precursor or trigger for the diagnosis that followed.

Natalie

Yeah, I actually get this questions pretty often. I worked for Facebook specifically, so “what role did your job at Facebook play in this?”

I think that the fact that this is one of the first questions I’m often asked says a lot. I don’t know exactly what it says, but I feel like it does say a lot about what we tend to assume when we’re hearing about someone with what was in my case, a very sudden onset of chronic illness. You know, we’re always looking for the why and I looked for the why for many, many years. And Facebook was never really the the why to me. I was, I was in a really low stress role at the company, working on long term data center infrastructure projects, stuff that didn’t have a lot of deadlines, it wasn’t customer facing work.

I worked there during the height of the second tech boom. So you know, it was free lunch, free dessert, free coffee. It was Disneyland. That’s not to say that I did no work when I was there. But it just felt like a job that I was capable of balancing well with my personal life. And that’s not to say that stress doesn’t take a real measurable toll on the body. And I’m sure that, you know, Facebook must have had some effect on something. But I guess it’s just difficult for me to look back on that time and blame something like my relatively unstressful job for what happened next.

And in hindsight, I’ve had many, many doctors use my tech job as the scapegoat, like as an excuse to not investigate any causes for my migraines. They were just like, well, you were in a stressful job. And that was it.

Kimberly

That’s really fascinating. I’m of course, and I assumed it too, we think tech job and we just assume it’s high stress and Oh my God, there’s so many demands and you’re not getting enough sleep and it’s really refreshing to actually hear, because I was actually just listening to a live session on Substack an hour ago, not a migraine disorder, but a neurological disorder that happened out of the blue and people want to find blame.

They don’t like, doctors don’t like it, patients don’t like it. We don’t like to know that shit happens. And so it’s refreshing to talk to you because I think that’s not out of the norm for people to just go, Things just went awry. We’re not always in control.

So you have this wonderful essay. It’s titled, How am I? No, sorry, I got to say it right. How am I? Bad! That’s the title. Whereas in our sort of fix it up culture and the American pass it on billboards, they tell us that everything has to kind of have a a fix or be wrapped in a nice, tidy, package with a pretty little bow on top of it.

And I want you to tell me a little bit what you think these sort of pass-it-on billboards and the larger sort of societal views tell us about how we think about illness. And if you could design your own billboard, what would it say about illness?

Natalie

Yeah, I feel like this essay, which is actually one that I have wanted to write for years and I was waiting for a publication that was willing to pick it up, is one that is just so near and dear to me and it makes me, I feel like it’s near and dear to you too, given that we’re talking about unfixed here. And this is, you know, something that I realize a lot of people bristle at the idea of being just openly unfixed or openly broken or openly struggling. And this essay ended up being published in Christianity Today magazine. They are also the people who titled it, so they get the credit for that. But I ended up really glad that this got picked up by a Christian publication because I think that Christianity especially tends towards this problem, but our society at large with the Pass It On billboards, I think is kind of just tacitly saying how they want people to act. know, like we were kind of expressing a belief system and by platforming certain types of people. There’s all the people in the Pass It On billboards are always, of course, like happy. They got a Harvard degree at 95 years old or, you know, they’d like ran a race with no legs. And, you know, these are all like great things, obviously. But for someone like myself who didn’t feel like I could embody that like inspirational persona—

I mean, even on top of that, having a neurological disorder kind of adds to the complication of this, because it’s like your brain is perhaps physiologically incapable of, you know, doing anything, not to mention like being inspirational, but, you know, that aside. I always kind of felt like I can’t be this person and I just decided to start complaining about it a lot, being like, Why do we do this? I think it’s silly. I think that people with chronic illness are not the only people who are struggling profoundly with something in their lives. You know, suffering is everywhere and it takes many different forms. And if we’re telling people you got to sweep that under the rug and, you know, just give us something inspiring that we can consume, then I think that we are really missing out.

Kimberly

I absolutely agree. And that’s key, Natalie, the missing out, because I do believe that that other path where we’re present to the pain, we’re present to the grief, we’re present to the uncertainty, there are gifts in there. And just even by saying gifts, we’re implying again, there’s some happy ending, but, I don’t mean that, I mean that there are things to investigate and be curious about that can enrich our lives in ways that never would have happened if we just always try to leap to the heroic redemption arc.

I think you said, especially in the church, this was a place where you couldn’t be in tears, you couldn’t share the struggle and therefore, mean, imagine you didn’t really feel much of a community when you were going through this. It sounds like it was quite isolating to feel like you can’t really be your true self. So I wanna know what did that moment of dropping the happy act teach you about the kind of community that you do want to shape?

Natalie

Yeah, I would say that my view on how my church in particular handled this is nuanced in the sense that there were kind of a select few people who got it and, you know, were really willing to show up in this place of profound darkness in my life. I value each of those people so deeply. But on the flip side, I think that anyone who’s grown up in a Christian environment has heard things like, well, God works all things for good. And God loves you in spite of it, or He sees you. And these are the sorts of things that I found astoundingly unhelpful because they were kind of ways to disengage and move on from a problem that you were talking about really requires sitting with someone and just being there. And so I did struggle a lot with, How should I be with people when I’m when I’m getting these sort of pat responses. Like maybe, maybe people don’t actually want to connect with me and my suffering. Maybe people aren’t suffering and so like they’re not going to get it.

It was very recently actually, it was actually after my migraines went into remission that I had this sort of breakdown slash epiphany where I was just so overwhelmed by fear of relapsing and fear of pain returning that I was just like, You know what, I’m just gonna see what happens if I am honest about this and, and that choice still continues to pay dividends in relationships with people.

The church especially, if you look at the how the church was established, like in the Bible, it was a bunch of like, like downcast, oppressed people, broken people, sick people, like a lot of sick people. So I think that is, you know, that should be the ideal for faith communities is that they’re full of broken people who are sharing about their brokenness and getting through these things together. Otherwise I don’t know. I don’t think we really need the church, nor do we really need God if we’re, like, just fine. I don’t know. Seems like not worth the effort.

Kimberly

You’re reminding me of Rachel Naomi Remen. She’s an author and she said something in a podcast once, she’s also physician and said, I realized that not everything can be healed. Some things just need to be held.

I really relate to that, that there are in that community that you’re talking about, it’s about holding one another and saying, I see you and you don’t have to change in order for me to still be with you and care for you and love you. My husband, prior to when we were together, his daughter, who’s now 30 years old, but when she was born, she was born having seizures and severe intellectual disability and it was just, it was a nightmare early on. And he was very much a part of a fundamentalist Baptist church at the time. And people from the church were coming to the hospital and telling him things like, like you said, pat responses like “it’s the Lord’s way.” And he just felt so empty by this flood of people that were coming, but they didn’t have much intimacy with what they were sharing.

He remembers the first thing that really felt connected to him was when his brother showed up and said, “David, this is shit.” And he suddenly felt like, he could just finally cry. He could feel held, he could feel seen. And it’s just that to me, that story says so much about what we need when we’re in a crisis. So yeah.

Natalie

I try to be as fair as possible when critiquing the church in this because I think sometimes you can love someone so much that you’re kind of going through your own miniature version of their suffering when you’re watching them suffer.

I’ve definitely seen a lot of the pat responses like that end of the spectrum. But I think the other end of the spectrum can be just as hard to deal with sometimes when like, people really care about you because they’re in your community and they want to see you get through this thing, this terrible thing. But you know, it’s hard to not know what to do. And I’ve been on the other side of that so many times. I think that people often assume that I know how to deal with sick people because I’ve been sick. I still don’t. I still stick my foot in my mouth so often. Yeah, it really sucks how this compounds the problem, like you were saying. All sides of this are just fraught.

Kimberly

And that’s why I think the word for me, I just come back to the word unfixed because then you can we can just be messy together because I too stick my foot in my mouth all the time. I don’t know. I feel uncomfortable. I feel like, I need to fix this. And I mean, we’re human and it’s okay if we’re all just a little bit more okay and graceful with the mess. There’s so much more room to just be together in that.

Let’s back up for a second because I want people—‚You’ve written about your migraines and they were severe. We’re not talking about like once every couple months, you put a pillow over your head. Tell me, I mean, one of the things you talked about is extreme light sensitivity so much so that you couldn’t even look at a sunset. Tell me a little bit about the extreme experience of these migraines and then I’ll continue with a question I have.

Natalie

Yeah, yeah, I often forget to give this context. So thank you for backing up. You know, when you’re in an experience for so long, it just becomes just like part of your reality.

So my first migraine occurred in August of 2019. That was when I was working full time for Facebook. And that migraine lasted for 10 months. That’s what’s called status. Like a status migraine is one that just goes on forever. And so I tend to describe this as I went from normal to in chronic pain completely overnight, like instantly. And for six years, I would find some things that made some improvement. I ended up trying all the pharmaceuticals available for migraines. I tried to not be very, know, discriminating when it came to treatments, because it’s like, I’m in so much pain.

But how it generally was was on average as I was having a migraine like 28 to 30 days out of the month and I would get, you know, a couple days off, scattered throughout the month. And yeah, that resulted in just a lot of compounding symptoms like the light sensitivity and sound sensitivity, smell sensitivity. It became like the entire outside environment was intolerable. I wore hats inside buildings because even the lights in my own house were intolerable. And yeah, that was what upended my life. I didn’t even know that I was having a migraine until close to three months after it had began because I had never had one before. Most people who develop chronic migraines have them and then they get progressively worse, but that wasn’t what happened in my case. So it was certainly jarring.

Kimberly

Wow. Yeah, and I would imagine frightening too. There’s the compounding of you’re having the experience, but then you’re witnessing yourself having that experience. You’re witnessing your life falling away. You’re witnessing your relationships falling away. So there’s this anxiety that lives on top of the actual physical experience. Was that happening for you too, where it was a downward spiral.

Natalie

Yeah, I mean, it was sheer panic from many perspectives. Like my relationships were thrown into chaos. I lost a lot of them early on, which I think is something a lot of people with chronic illness can relate to is that some people simply cannot handle adding that into their lives and they walk away. Even just facing doctors who were all pretty much universally uninterested in why my migraine started so suddenly. It felt like fighting this huge battle all by myself because like everyone around me was also thrown into confusion.

And I talk about this more in the memoir that I’m working on, but my husband in particular struggled because we had recently lost his mom to cancer. And a lot of the needs that she had toward the end of her life because the cancer had spread to her brain were suddenly becoming similar to my needs at the beginning of my illness. And that was…it was intolerable for him to witness, you know, for many reasons. But yeah, I mean, that also kind of threw our marriage into this really uncertain spot all of sudden.

Kimberly

Holy cow, Natalie, the same thing happened. I just told you about my husband’s daughter with intellectual disability. So this was, she was 20 at the time when this was happening to me. And all of a sudden I was the one that needed him to hold my hand as I was crossing the street. And I was afraid to go outside and I was afraid to be in public. He had one daughter with disability already for his whole life. And then all of a sudden, you know, his wife was needing him for everything and it freaked him out and it really, really, it was so painful. And in fact, I ended up leaving and living with my mom because he couldn’t handle both of us. It was just too painful for him. So I’m completely relating to what you’re saying here. My husband and your husband should get together.

Natalie

Yeah, I mean, and people don’t talk about this a lot, like the effect of chronic pain or chronic illness on marriage or really close relationships like that. But yeah, I think it’s in hindsight, I’m like, Oh my gosh, he was trying his absolute best. And in the moment, I was like, you are a complete failure, you know, because it was like my life had just been turned upside down and I suddenly needed everything from him more than you could ever demand of a single person. And just how that changes the dynamic is profound.

Kimberly

Yeah, they fall in love with this independent go-getter and they don’t, it’s just all of a sudden it’s a completely different person and they have to renegotiate the love for that type of person. And it is hard. And of course we’re the ones with the needs and so they don’t even really have a space to feel, probably feel what they’re feeling or feel like they can feel what they’re, it’s just, it’s a mess. Yeah.

Natalie

Well, totally. I mean, since going into remission, my husband and I have actually had, I think, a higher percentage of arguments than the whole time that I was sick. And I mean, he was so good to just lay it out there and be like, I’ve been keeping so much in. There have been so many things that I wanted to work through with you that I couldn’t.

That hit me like a ton of bricks, how much my partner was carrying through all of that.

Kimberly

Yeah, let’s talk a little bit about your remission because you talked about it in an essay as writing in wet concrete. You know, this idea that the door might slam shut or it might swing open. And we don’t really know. Remission can be temporary or it can be forever. So what is surprising you the most about inhabiting this sort of messy middle where you’re kind of not in the kingdom of sick anymore, but you’re also not really in the kingdom of well.

Natalie

Probably the most surprising thing about remission other than remission itself, which I was never expecting to achieve, is how completely terrifying it is all the time. I think I had this idyllic pipe dream, maybe because I thought I was never going to be in remission, but I was like, Oh if I ever woke up one day and my migraines were gone, that would be my perfect life. There would be nothing wrong.

That ended up not being true. Remission actually kind of made me feel like I was teetering on the edge of this cliff. Though I’m not in reality, because I’m actually in a really fortunate situation where even if I do relapse, I have a treatment I can grab onto that’s gonna bring me back. And so I know that things are not gonna be as bad as they were before. But my brain doesn’t know that yet. Chronic pain teaches your brain a lot of things that don’t make a lot of sense, you know, out of fear and out of trying to protect you from all these like overwhelming symptoms.

But this has made it so difficult to try to re-enter the world. Like I remember the past couple months, I went into remission in around April of this year. And I found myself going to bed earlier and earlier because I was exhausted by how much I was doing in a day. I was overwhelmed by my own activity level and and my husband Cory kept pushing me, he was like, Why don’t you go out to like reading at night or why don’t you, you know, try to stay out past nine and see how it works.

Sometimes it would work and sometimes it would not. Sometimes I would just like break down and panic. Or like last week I walked into an Ulta and that sort of store has a bunch of smelly hair products and perfume and those were all things that would have triggered me just instantly in the past. And they didn’t trigger me now, I didn’t get a migraine, but when I walked out of the store I noticed that my heart was racing. Because I was still living in that old reality. So it is very much a messy middle to answer your question.

Kimberly

Yeah, it’s reminds me of exposure therapy, where it’s almost like you said, your brain doesn’t know yet that the remission happened and its trauma is traumatized, essentially. And so everything that it learned that was a trigger during that period of trauma, it’s going to be hyper vigilant about like, Oh no, that that’s going to happen. And slowly, I’m listening to you and I’m remembering that first year or two. It took a couple years, but it finally, my brain finally started to build tolerance for even the little triggers and even the little setbacks where it was like it just needed slowly but surely to go, I’m okay. Or, gosh, I’m dizzier again today, but tomorrow, wow, look, I’m already back to the baseline.

And it’s, but it just, takes time like trauma therapy almost and or like exposure therapy where it has to be introduced to life again— all of it, not just like the good stuff, but all of it so that it learns tolerance.

Natalie

I mean, I still get occasional migraines and every time that I do have one, I’m convinced that like, everything has gone back to the way it was. It’s so hard to coach your brain out of that way of thinking. And something that is not discussed often within this category is— how our society handles financial support for disabled people made this middle even messier because I’m in remission. I don’t know for how long and I don’t even know what the end state is of that remission. I’m still going through it.

I do have disability payments. And, you know, from the perspective of a disability insurance company, it’s black or white, you’re sick or you’re not. And it was strange how much that came into play when I was thinking about what is happening to me, how do I share it with other people?

I delayed sharing about it on my own Substack for a long time for this reason, because I had to be prepared for as soon as I say it on the internet, it’s done. That’s part of what I meant by it was like writing in wet concrete. Because it may very well be that I could lose my disability payments over that, which I hope to lose them soon anyway. But it’s just like another complication to how this phase of recovery has felt. I don’t know if that makes sense. But yeah, I feel like most people don’t talk about that online because it’s very tricky to navigate.

Kimberly

Yeah, you don’t want to lose your disability, your payments, you don’t want to lose the treatments, you don’t want to lose all of that. But at the same time, you don’t want your identity to be completely wrapped up in it. And you’re trying to get back to the land of the living and the land of the well. But how do you do that, knowing that there probably are going to be triggers and you might fall back again and the insurance companies are asking you to be one or the other. And it’s never that. We are gray. Human beings are gray. And so even the fact that they’re asking you, well, are you better? What happens if you go back to work and suddenly it strikes again? You talked about, what in computer science is called the halting problem. Can you explain a little bit about what that is and how you connected that to your pain?

Natalie

Yes, though any real computer scientist watching this is probably going to nitpick my memory of what the halting problem is because I did not do well in school. But to my memory, it’s this theorem in computer science that talks about how it’s not possible to mathematically determine whether a program will stop running.

This is one of the quintessential problems of computer science and it’s basically like solving for infinity. Like, can you prove that something’s going to be infinite or that it’s not going to be infinite? And that was often how I thought about my migraines when I was in the midst of them. Even if I got them to stop for, let’s say, a year straight, what kept them from returning on day 366? And so that caused me so much anxiety because I’m just like, how will I ever know if I’ve won, you know, if I’ve moved on? Which was, in hindsight, such a very specific thing to be worried about given that even the prospect of remission was so remote.

But anyway, that is not how I think of it now, now that I’m kind of in that stage. I still have good days and bad days. There are still days when my pain comes back, which was exactly what I was fearing. But everything has shifted down the spectrum where my worst days are what I would have considered my best days in the past. And even just having the knowledge of I know what’s happening to my body and I know what’s causing these migraines, there’s suddenly just a lot less uncertainty. There’s more control. And I think that’s a lot of what chronic illness takes from you is control. It just...

It gives you no control over even your own body. I say that not to say that I don’t still live in fear because all the things that we were just talking about still happen. But I guess I’m like not, I’m kind of inhabiting both the realities at once, if that makes sense.

Kimberly

Yeah, what I hear you saying is it’s almost like you have more tolerance for things to not be completely better. And you have more tolerance for the somewhat bad days. You know that you’re going to survive now. And there still can be fear. You even have tolerance for your fear, it sounds like. It’s just a little bit more grace for all of the experiences instead of going, instead of going Oh my God, this has to go away or I’m going to die.

Natalie

Yeah, I guess as we’ve been talking about gray areas, I think I in the past I was looking at this is as very black and white like all I will accept is complete and total recovery and now that I am recovered but not totally, I’m like, this is good enough. This is great. So yeah, I think it humbled me a bit to realize that like, I didn’t need total recovery. I just needed something better than where I was at. And I’m thankful to have that every day.

Kimberly

Yeah, boy, I relate. I’m always dizzy still too, but it’s like, I’m thankful that I can live with this now versus before where it was completely sending off alarm bells in my brain. The alarm bells would then make the dizziness worse. So I’m able to keep it kind of at a low baseline dizziness on most days. And it’s like, good enough, good enough.

Natalie

Yeah, it really challenges some of our notions of contentment. We can settle for imperfect things. And that can enable you to live a lot more than waiting for the idyllic reality.

Kimberly

Did you feel like the, you talk a little bit about your ketamine experience. Do you feel like that the ketamine infusions kind of helped you with some of this? Because I haven’t done it myself, but I do know that there’s a little bit of that space that’s between your pain and your identity during them, or maybe describe to me what that’s like for you.

Natalie

Yeah, I’ve never been asked about ketamine directly before, or at least not in this way. Looking back on it, I think I have a different opinion of it than when I was actually going through it. And I think it’s a pretty controversial opinion in that I probably wouldn’t do ketamine again. And I’m talking about intravenous ketamine which did help my pain for a limited amount of time. It was definitely interesting and like weird and enjoyable and I enjoyed being able to detach from my reality a little bit, but I guess now looking back I’m asking myself questions like, Is detachment always the right thing to do? And is it always good for you to detach? I think the answer can be different depending on the situation. I think that detachment can be good. I’m not sure if it was good for me at that time given what I was going through.

I also am very cautious about psychoactive drugs now because having experienced them, there is an aspect of that, that you’re basically just like willingly compromising your brain, right? Like you’re in this altered state of consciousness. And it just makes me think about how like my brain lies to me enough, like it lies to me all the time when I’m in a normal state of consciousness. And so, I don’t know, it just makes me wonder if like altering your state of consciousness makes your brain more or less honest. And can we even prove that?

Kimberly

My brother’s friend has a clinic, he’s a clinical psychiatrist and does ketamine therapy a lot with veterans, actually has a government grant to do this work because it’s been really helpful for PTSD. I think there’s a usefulness as with anything, it’s always both. But for that dissociation that you talk about, I think when the brain can only perceive the pain or the trauma as bad, as something that is attacking them, as something that is dangerous. And it needs almost like a knife to cut through it so that you can somewhat free yourself for a moment, for a split second even and go, dizziness might not be bad. It’s just an experience.

And that little moment, I think, is a breath or a little bit of freedom that then brings you back to where you don’t have to be dissociated anymore. You can just have this new perspective on Is it bad or is it good? I don’t know. Instead of It’s bad! and It’s dangerous! and It’s horrible! That’s the way I perceive it when I’ve heard my brother’s friend talk about it. It seems like it just offers a little bit of a light in there when it’s just too darn sticky.

Natalie

Yeah, I believe that many people do have that experience. It was not my experience on the whole. And that could be for any number of reasons. I also had like a lot of additional life stressors that came into play right after I did the ketamine treatment. So did that keep them from sticking? Would it have been different if it was otherwise? Maybe so.

Kimberly

Or not, you know, everybody’s different. I mean, you’re obviously very bright and, you know your body and you’ve been very intimate with this experience since 2019 now. So, you probably know when something is working and when something’s not. And you’re the only person that’s going to be able to figure that out.

And I’m curious, you mentioned, and you haven’t written about this yet, but you are in remission, and you feel like you’ve kind of hit upon something that really works. And I don’t usually talk about cures over here because this is not sort of the philosophy, but I am for any listener who’s just maddeningly dealing with migraines, what did you come across that’s really working for you?

Natalie

First of all, I’m glad that you don’t get caught up in this world of treatments and cures and stuff like that. Because I received so much unsolicited medical advice even now and you know, it’s terrible. No one likes it. It’s so anxiety inducing. And that’s part of the reason that I’m revealing a lot of this information slowly to the people that are reading my Substack because I would consider it a huge betrayal of trust for me to just be like, Here’s how I recovered. Like, it’s great! You should do it! But, I think you should use your own brain and decide for yourself. That’s my ultimate opinion on the matter.

But at the same time, I do consider myself cured. And the reason that I’m using the word cured is because chronic pain conditions are generally thought of as things that can be managed and not cured. Managed meaning like you make some dietary changes, you do some pharmaceuticals, mindfulness, know, therapy, you know, any number of other things and these are all supposed to add up to something that basically plugs all the holes in your sinking ship. And that’s what I was told was the ideal I was aiming for. You’re just gotta, you’re gotta find the right combination of all these things.

And so much to my surprise, it was one thing.

There is this doctor in Utah. I don’t know if you want me to say his name or not.

Kimberly

It’s fine unless he doesn’t want you to, but it’s fine if you do.

Natalie

I think he’s fine with it. So his name is Dr. Bills and he’s at this clinic called the Migraine and Neuro Rehab Center. He’s one of the first doctors to be doing research on the connection between metabolism and migraine. And he has a study that he’s submitting around to journals right now. This study is all about how there are certain metabolic disorders that can cause migraines. That’s all it is. It’s like you have an underlying metabolic disorder and it’s not all of these other triggers adding up.

So he found one such metabolic disorder. He gave me continuous glucose monitor, and it was shocking that I could see my migraines. They were like right there. And the treatment was just an extreme version of the keto diet, like a medical keto diet. And I only had to do it for three months and then I could transition back to a low carb diet. I’m not, you know, eating a loaf of bread every day. But it’s an otherwise normal diet. I’m no longer keto. And the metabolic condition is gone. I see that it’s gone because I still wear a glucose monitor and my chronic migraines are likewise gone. And so it’s one of those things where I’m like, I feel like everyone is saying like, this sort of treatment for migraine doesn’t exist. It’s like impossible. But I mean, it seems to be possible. It completely changed my life.

Kimberly

Wow. Well, it makes sense because obviously metabolism affects everything else. And if you’re having spikes or drops in your blood sugar, it’s going to send other chemicals into your brain saying, you know, We’re in danger or We need something else and it’s going to send—youknow, the whole, there’s a cascade of effects that happen from that. So it makes sense to me. And I’m fascinated by this.

I know a lot of people in the vestibular community often say that they become, when they have these vestibular episodes, they also become very sensitive to sugars or to not eating. They have to be very religious about eating every hour or something so that their blood sugar doesn’t drop. And so I wholly believe there’s a connection there.

Natalie

I had heard similar things like, you should watch your blood sugar, you shouldn’t do refined sugars. I think a lot of people have been circling around this idea for a long while, so when he laid it all out I was like, Oh yeah, this makes sense. This adds up.

I feel like the majority of the problem now is communicating this to the scientific and medical communities. Let’s say it helps like 1 % of people with chronic migraine, that’s still a lot of people. And yeah, it’s not to say it’s going to help everybody, but it felt to me just so revolutionary that there would even be a doctor that would say, What if it’s just one thing? Like, what if we just fix that thing? And I was like, that would be great.

Kimberly

Wow, I’m so happy for you. What was it like? You talked about not being able to ever look at sunsets because of the light. Have you seen a sunset? Have you looked at a sunset since you’ve been in remission and what was that like for you?

Natalie

I have, though I’m actually still kind of, I think a lot of the lingering effects of chronic pain are making it so most of the time I still don’t love looking at sunsets. But I can, versus before I like just straight up couldn’t.

Even considering things more than sunsets, just being able to like, I don’t know, go outside without sunglasses. Occasionally I just get frozen in awe. Like, Oh my gosh, I can see the world as it actually is without darkening it and just taking in the light, enjoying sunlight. I didn’t know that people could enjoy sunlight. It had completely left my mind. So many of those moments have just been sweet and surreal. It’s almost just made it feel like a complete dream that I’m going to wake up from tomorrow and then I’m going to have to ask you to scrap this whole video because it didn’t actually happen.

Kimberly

It’s almost like you’re getting to just come back to life. After a long winter an annual decides to come back instead of die off completely. It’s like, know what, I’m gonna give it another go. We have annuals here that are not supposed to come back because they’re annuals and they still do. It feels like you’re coming back to that new life again in your own experiences.

So let’s come all the way back to living unfixed because some of us won’t get there, you know? And I know that even the getting there is like, Well, what is there? And so one woman in the Unfixed docuseries talked about how she feels like her spirit’s been healed, even though her body has never been healed. And so the “getting there” can look so different with so many different people.

I love the quote by Susan Sontag where she says, “We hold passports to the kingdom of the sick and the kingdom of the well.” So having lived in both, Natalie, what wisdom does this living unfixed hold for people who have never been there and probably will get there because it’s just part of being human. But what is the kernel of wisdom that you believe you carry now from having this experience?

Natalie

First of all, I’m glad that you pointed out that not everyone is necessarily gonna get to the spot I’ve gotten to. And that is important to highlight because even from where I stand within this experience of recovery, I see how recovery wasn’t actually the goal, or it wasn’t actually the thing that changed me. It was learning how to live my life unfixed, in spite of whatever the circumstances were. And the fact that in the end was recovery for me I think is less consequential than what we learned by learning to persevere and endure and live in spite of everything that we suffer through.

This question makes me think so much about how everyone is dealing with something. Like the intensity of what each of us is dealing with is different. Not all migraines are like 28 to 30 days out of the month, but that doesn’t mean that they’re not suffering. And I think that in a way we all bear scars from this battle that is life. So, I don’t know, I think that this sounds weird to some people, but I think it’s a better state to be in to know how broken and unfixed you are than to be totally ignorant of that.

Because if you don’t realize the ways in which you’re struggling or the ways in which you’re broken, then there’s going to be no room for humility or gentleness or compassion for others. And so I don’t know, I guess I tend to pity people who think they have their lives all together because in my opinion, they’re lying to themselves. There’s no way to prove that, of course, but that’s just where I stand from having, you know, found so much companionship in suffering, even though people were going through totally different things. I think that means maybe all of us are going through something.

Kimberly

Absolutely, beautifully said. It reminds me of Sophie Strand, I just interviewed her. She’s an author of The Body is a Doorway. You will love that book if you want to pick it up. And she wrote, “To be healthy is to be isolated. To be sick is to be relational.” And she’s writing this from her own experience of illness, autoimmune and everything since she was young. And so, and she has this real ecological approach to our bodies being porous and bridges to one another and to the natural world. And in some ways, when we’re totally healthy, we are cut off from this relationality, which is more the truth of who we are, because we are interconnected in every single way.

Natalie

Kind of going back to the Pass It On billboards, I was thinking about how, if there were one for me, it would probably be something like Dependence: Pass it on. Because I think it’s an undervalued trait in our society, needing other people. And I think that there’s a lot to be learned from having no choice but to accept help and to accept love from the people around you. I learned a lot from that.

Kimberly

Beautiful. I think that’s the title of your next essay, Dependence, Pass it On. Well, Natalie, is just so lovely. We are sisters of, what do you call it? Sisters from another mister. Sisters from another mister. I feel a real kinship with you and I’m so grateful that we got to spend this hour together. So thank you for being here with

Natalie

Likewise, yeah, I’m thrilled with the work you’re doing and I hope for more and more people to learn how to live on unfixed, whether dealing with chronic illness or not. So keep doing what you’re doing.

Kimberly

Yeah. Yay. You too, Natalie.

***Current update from Natalie

It’s been almost three months since Kimberly and I recorded this conversation, and as it turns out, a lot can happen in three months! I’m now happy to report that not only do I remain in remission from chronic migraines, but I’ve been able to normalize my diet even more, plus travel with my husband on a once-in-a-lifetime vacation to Europe—something I wouldn’t have even dreamed of at this time last year. And as I’ve gotten further and further into recovery, the fear of relapsing I spoke of in this interview has largely disappeared. That’s not to say I’m still not at risk of returning to chronic migraine land or that I’m even done recovering from the six years I spent there. But over the past month especially, I’ve been practicing choosing hope over fear of the future, and this has been such a liberating thing for me. I share this with you to celebrate, and to encourage you with this truth: There’s a lot of darkness in our world today, but darkness does not always win.

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