A few weeks ago, my husband presented me with a Funfetti birthday cake topped with rainbow unicorn sprinkles and 20 candles, then sang “Happy Birthday.”

My birthday is still four months away and when it next comes, I will be turning 35, not 20.

For those who missed my last post, I’m pregnant, and I requested—nay, demanded—this birthday celebration at the 20-week mark. Because pregnancy is approximately 40 weeks long, and getting through half of it felt like an occasion for cake.

Don’t get me wrong, I wanted to get pregnant, and it’s something I celebrate all the more knowing that for the six years I had chronic migraines, I thought I would never start a family. I was in too much pain and, I was told, unlikely to ever recover from it. So each day my belly grows is a reminder of just how much has changed for the better—of how many beautiful, brimming-with-life possibilities recovery has brought within reach.

I have so much to be thankful for.

But also, pregnancy has been a b****.

Don’t worry, I won’t use this post to complain, because it could be going much worse. (If you want to hear my complaints, please do share your contact info below. My husband will thank you!) But I have become reacquainted with not only severe migraines but also certain other symptoms of my chronic migraine disorder that I thought I’d left behind for good.

This isn’t to say I’ve relapsed. I still feel much better than when my migraines were chronic, and I expect it to remain that way. I also have a lot more knowledge on how to manage them now than I did during the six years I was flying blind, having been told that my condition was caused entirely by a messed up nervous system.

But the fact remains, pregnancy has been hard. This past week, for example, I got a migraine that took me down. The pain that chewed across my face like a hungry wolf, the fatigue and nausea that froze me in place, the photosensitivity that made the ceiling lights feel like flying shards of broken glass—I hadn’t had such severe symptoms in well over a year, since before discovering and fixing the underlying metabolic problem that caused my chronic migraines. How did I do this every day, I asked myself as I curled up on the couch with my ginormous pregnancy pillow and cried. (Pregnancy pillows, by the way, are the best thing since sliced bread. I wish I had known about them when I was a professional couch potato.)

I also thought, surviving isn’t all it’s cracked up to be.

I don’t know where I got it from, the notion that illness and injury survivors are always tough as nails. Maybe from the popular pop mantra claiming what doesn’t kill me makes me stronger, or the Pass It On billboards featuring triumphant-looking cancer survivors and amputees running marathons.1 Whatever the reason, when I first recovered from chronic migraine disorder, I imagined one day being the sort of resilient, unstoppable, inspiring survivor you’d feature on a billboard or in a TV commercial.

I’ve yet to feel like that person, and since getting pregnant, I’ve felt like quite the opposite. The fact that I’ve overcome an incurable disease means very little in these migrainey moments. My brain and body remember too much of illness, and those memories fuel fear—fear that the skeleton of that illness living inside of me will once again grow skin and bones. I’d wager many other survivors have seasons of feeling the same. Because in order to become a survivor, you must first go through war, abuse, grief, pain...any number of situations that leave scars as deep as they are invisible.

This is why I requested a birthday party halfway through pregnancy, and why I blew out those twenty candles with zero shame. The shamelessness probably had something to do with my hormones, which have driven me to wear dirty pajamas in public, rearrange our entire living room on a whim, and go to Trader Joe’s just to buy some veggie sushi that I ate like finger food on the way home. But the shamelessness was also because I’m a survivor of a chronic pain condition that left me feeling not tough but traumatized, and trauma makes day-to-day living an act of overcoming the past. Of survival.

And survival is something worth celebrating.

I doubt pregnancy will ever be easy for me, just as I doubt that Pass It On would ever feature a crying, migrainey pregnant lady as an emblem of survival on one of their billboards. But that’s okay. I know the truth, which is that survival doesn’t always feel like strength.

And besides, I have cake.2 🧠

😵‍💫 We all have a billion things competing for our attention these days. If this newsletter is taking too much of yours, click here (then scroll down) to unsubscribe. No hard feelings, and hope to see you around!

🤯 Chronic migraineurs and other Brainees interested in learning how I recovered: I frequently update this post with the latest research and resources. There’s also a new Facebook group for those exploring keto for chronic migraines.

👶 Because I know many of you will be asking: I’m due December 29th! Stay tuned for details on what will become of Oops, My Brain while I’m in the daze of early parenthood. (Nothing catastrophic, I assure you!)

Many of you probably know that this past Independence Day marked the 250th anniversary of the United States. But how many of you knew this a whole year ago, on July 4th, 2025? That's when my husband Cory first started talking about plans for "THE semiquincentennial" around the dinner table. Those plans included ordering an authentic Continental Army uniform (the Continental Army was the American army in the Revolutionary War, obviously) and traveling to Washington DC for the celebration.

Cory: "Actually, the Continental Army was just one of the colonial military forces. Lots of local militias in the mix too."

Neither of these plans materialized, thank God. But this is the sort of stress you live under when you're married to an American history buff.

Being obsessed with American history doesn't necessitate any particular political affiliation. At least in Cory's case, his passion transcends tribe or creed and prevents him hitching his wagon to either elephant or donkey. He's also not patriotic in the popular, flashy sense of the word. He doesn't engage in hot dog eating contests, wear clothing styled after the American flag, or go to monster truck rallies. Instead, he cultivates a great deal of awe for George Washington and is capable of being moved to tears by “The Star Spangled Banner.” Not because he holds sentimental notions that America is the greatest country in the world. (Cory: "It might be. It depends on what you're measuring.") He is simply deeply infatuated with the American Experiment and what made it work--how a democracy emerged from the world's largest empire.

Cory: "Don't write 'democracy!' Most of the Founding Fathers were pretty opposed to democracy as we understand it today. 'Mob rule.'"

Cory also isn't insufferable by any means. In fact, I'm one of the few people that know the extent of his American history addiction. He hides it from others for fear of looking a know-it-all. And perhaps for good reason, as he does know a lot. He's read nineteen books on the Revolutionary War era alone.

Cory: "That doesn't seem like that much. People are going to think I'm an incompetent idiot!"
Cory: "Also, what are your criteria for these books? Andrew Jackson was a kid during the Revolution, but he was very much shaped by it. I've read three on him alone!"

The factual knowledge, to him, is incidental. What he's really after is a deeper understanding of what America was meant to be, how it has grown and changed, and how this applies to living in America today. Though I should warn you, asking Cory what America was meant to be will get you an earful, whether he knows you or not!

Despite the lack of Revolutionary War uniform, this year's Fourth of July descended on our house with much ado. It began with Cory re-reading The Declaration of Independence, which he has in a printed book that also includes the US Constitution, given to him by his fifth-grade Social Studies teacher. He knew I wouldn't stand for an oration, so he read it quietly to himself. But by lunchtime, he could no longer contain his reactions to America's founding document—a document he has read countless times before and committed large portions of to memory.

With neither invitation nor transition from a related topic, he began:
"Are life, liberty, and the pursuit of happiness truly unalienable rights? What makes them so?"
"Is it really the right of the people to abolish an unjust government?"
"King George wasn't all that tyrannical. He was quite progressive for his time, you know."
"Was this rebellion from Britain truly just? Would I have joined it? I may have been a loyalist!"
"This reminds me of that book I want to read, written by a soldier in the Continental Army..."

I used to have little tolerance for these history tirades that possess Cory from time to time. If I'm being honest, sometimes I still can't stand them. I don't care about American history. And on a deeper level, sometimes I don't care about much at all. Especially when I was sick, I lost much of my ability to care about "superfluous" things. How could I when survival seemed to take all the energy I had? I found life to be a drag and nothing to be all that interesting. But now, after I've recovered, Cory's extreme interest in various topics—he also loves marine mammals, theology, and jazz—reveals something in me that I don't want to see: Though I've healed physically, much of the blah-ness of illness remains. It's as if my husband sees the world in full color, while I see it in shades of gray.

I envy him this. I love him for it, too. And lately, I've been trying to use it as a reminder to pursue awe and wonder.

So while I don't always have the patience I should, this past Fourth of July, I decided to listen to everything that Cory had to say with real patience (though still not the level of enthusiasm he wanted, I'm sure). After all, there were worse ways for him to express his enthusiasm. He could have marched around our rather unpatriotic San Francisco neighborhood playing “Stars and Stripes Forever” on a fife, for example, or staged a re-enactment of the Battle of Brooklyn on San Francisco's Bernal Hill.

Cory:"Maybe McClaren Park instead of Bernal. Either way, you could't really do the boat evacuation bit without shifting to Baker Beach."
Cory: "Can I give a disclaimer? Most of my knowledge of Revolutionary War battles are the ones George Washington fought. I know very little about the Southern theater. But don't worry, that's next on my reading list!"

After lunch, we stopped by a bookstore so Cory could look for a biography of Rutherford B. Hayes. Hayes was the 19th president of the United States, in case the name didn't immediately ring a bell. It only rings a bell for me because Cory has been looking for this biography for over a year, in preparation for the next phase of his effort to read a biography of every president in order. Yes, Cory knows about Amazon. Buying from real bookstores when possible is part of the deal. I don't know why.

Cory: "Please tell your readers to be on the lookout for Rutherford B. Hayes by Ari Hoogenboom. Leatherbound copy preferred."

Remember what I said earlier about Cory having many interests? After the bookstore, we went out on a walk and the conversation shifted to a newer, different one. It's also the first interest in which Cory and I equally share, and one that's teaching me how to see the world in full color.

Me: "I'm thinking an aquatic theme. Whales, fish, etc."
Cory: "No nursery is complete without a framed print of Washington Crossing the Delaware. It's aquatic!" 🧠

We all have a billion things competing for our attention these days. If this newsletter is adding too much noise to your life, click here (then scroll down) to unsubscribe. No hard feelings, and hope to see you around!

I started blogging about chronic pain in 2019—a decade too late, if my goal was to become an influencer with lucrative brand partnerships. Luckily that wasn’t my goal, though on the day I started my blog, I wouldn’t say I had an alternative goal in mind. I was a week out of my first hospital stay for a constant, severe migraine which I’d had for a couple months and would continue to have for eight months more. I was 27 years old, unable to work, mostly unable to leave the house, and altogether terrified of what was happening to me. I wanted to feel less alone.

I spun up a blog on WordPress and took a selfie in my dining room to use as a profile photo. In the photo, I’m wearing a blue Patagonia puffer coat—the only coat that wasn’t too big on me at the time. I’d lost 20 pounds since the migraines began. I also wasn’t wearing makeup and wondered if anyone would be able to tell I’d slept for only a few hours. I wondered if anyone would be able to tell that I cried every night.

I sent the blog to my family and friends and started to write. The blog’s title, Yellow Grippy Socks, was a reference to a humorous encounter I’d had with a nurse about the iconic hospital footwear. Funny stuff only, I told myself, because it was the internet. Best to keep it light. And besides, I was a young person navigating the American medical system. Lots of my life was legitimately funny. Also, demoralizing and painful and sad. It was all these things at once. But I feared delving into any of the real difficulties in my writing. I assumed no one wanted to hear about them.

I quit my job and went out on disability. I cycled in and out of the hospital in a vain attempt to improve my migraines and traveled around the country in search of second opinions. Even within these difficulties, there were plenty of funny moments, like when I lost both my big toenails, or when I got ketamine from a rectal ozone therapy clinic. So I transitioned from WordPress to Substack, changed the title to Oops, My Brain, and kept writing the funny stuff. I was giving my readers what I thought they wanted, what I thought I’d promised them. And in many ways, humor was what I wanted, too. It was an escape from my moment-to-moment existence of severe pain and my daily fear of sleepless nights and purposeless days.

Then, when I was 30 years old, I had my biggest relapse. I went to the ER three times but was denied admission to the hospital. I rode out a six-month-long, incredibly severe migraine at home. I began struggling with both medical PTSD and suicidality. My marriage and friendships strained beneath the pressure.

I wrote about none of this online.

I did, however, start writing a memoir—also a decade too late, as sales numbers for memoirs were tanking. It remains one of the hardest genres to break into for ordinary, non-celebrity types. Luckily getting rich wasn’t my goal, though I wouldn’t say I had an alternative goal in mind. I just needed a form, a container that could hold all of this heavy material before the weight of it split me in two.

But humor was all I knew, so I set out to write a funny memoir that made passing mention of the harder stuff. Many of the scenes I started with were easy to funny-fy, like this story about when I went to the ER with COVID. But then I joined a writing group—a group I still attend to this day, full of some of the wisest, kindest, and wittiest women I’ve ever known—and they told me what I least wanted and most needed to hear. They told me, Write about your pain.

They meant this quite literally. Week after week I brought writing that made everyone in the room laugh out loud, and week after week I didn’t describe the actual physical sensation of having 24/7 migraines. The constant grip of a strong hand on the back of my head, the flares that ripped through my body like a starving wolf, the sharp stabs I so often felt in my left temple, the dull burning of sitting near a table lamp, the sting of being outside in the sun.

The emotional pain was missing from my writing, too.

I’d been writing online for three years about the hardest experience of my life and yet, I’d written none of the darkest moments. Perhaps because pain is not a very funny experience. It didn’t fit with my comedy “brand.” Or perhaps I just didn’t want to. Perhaps it was a little of both.

But I’m never one to turn down a challenge.

I began, slowly, to write a scene about a seizure-like migraine attack I had while in the ER. It was a difficult scene to remember, let alone to write. When I finally did write it, it contained not a single joke, and when I read it out loud to the group, they said it was the best I’d ever written.

I didn’t abandon humor writing (obviously, as you’re currently reading a Substack called Oops, My Brain). But on that day, I learned that humor had its place in my story. A place of honor, as so much of my chronic illness experience was ridiculous. I was recently reminded, for example, of a nurse that dressed me down for refusing to use a bedpan. But there were also plenty of experiences that sucked, and I would trade every joke in the world to have not gone through them.

In my recent attempt to find an agent for this nearly-complete memoir (an effort which may never succeed because, as one of my MFA mentors put it, it doesn’t involve me knifing a doctor, running away with a nurse, or doing anything else unbelievably scandalous), an agent suggested I title the manuscript Oops, My Brain. I demurred. Not because I don’t like the title Oops, My Brain—it’s the best title there is, and I consider myself a first-rate genius for having come up with it! But Oops, My Brain isn’t the whole story, because chronic illness isn’t a barrel of laughs. It’s a couple of laughs sprinkled over a barrel of dookie.1

Please understand, this isn’t a shutdown announcement. Oops, My Brain is alive and well, I hope it stays that way, and I’m too attached to the title to change it now. But if recovering from chronic migraines has taught me anything, it’s that the best stories are the ones that require you to show up as your whole self. So from now on, I’ll try to do just that.

Though I sincerely hope that I can still make you laugh. 🧠

P.S. I just finished my MFA in Nonfiction! You can henceforth refer to me as either “Natalie the Master of All Things Nonfiction” or “Super Writer.”

We all have a billion things competing for our attention these days. If this newsletter is taking too much of yours, click here (then scroll down) to unsubscribe. No hard feelings, and hope to see you around!

I’ve been debating whether or not to share the specifics of how I used the keto diet to recover from chronic migraine disorder because I did keto under the supervision of a doctor and I very much recommend anyone interested in reproducing the below process do the same. With that said, I’ve decided to share everything I can think of about my recovery process—pitfalls and all—as a resource for anyone stuck in the hell of chronic migraine or any medical providers interested in exploring this treatment option. Nothing in this post should be considered medical advice.

What do you mean by recovered? Can you eat anything you want and be pain-free?

This is the question I get asked the very most, and reasonably so. After all, why bother with any of this if the payoff isn’t worth it?

Today, I eat a maximum of 100-150g of net carbohydrates per day (I think—after getting an idea of my limit, I stopped counting on a daily basis). For those unfamiliar with the world of carb counting and net carbs, you can read more about that here, but the main thing you need to know is that the net carbs in a food is its total carb content minus its fiber content. Meat has zero net carbs (it’s all protein and fat), cheeses and dairy products have a little, veggies have some, fruits have more, and breads, grains, and sweets have the most. A cup of broccoli has 3.5 g, a burger bun, 25 g, and a can of Coke, 39 g. (From here forward, when I say “carbs,” I’m referring to net carbs unless if otherwise specified.)

Carbs are the only thing I limit, though I will say that (1) I don’t ever eat high fructose corn syrup and (2) the majority of my carbohydrates are not in the form of refined sugar. I do eat unrefined sugars such as honey and maple syrup. Oh also, two cups of coffee in the morning gives me a headache while one does not, so I limit my coffee intake, too.

A diet of 100-150g of carbohydrates per day that’s low in refined sugar is what I consider a flexible “healthy” diet. My usual breakfast is greek yogurt with muesli, fruit, and a bit of honey. Sometimes, eggs with sprouted grain toast. And coffee, of course! Lunch varies from a salad to Dave’s Hot Chicken (the best chicken place in the world) with coleslaw and some (not all) of an order of fries. A simple dinner at home is a meat, a veggie, and potatoes or chili with cornbread. I do eat dessert sometimes, but not every night, and never a second helping of it.

With this diet, I get an average of 5 headaches per month, none of them severe, long-lasting, or what I would generally call a migraine. Things that push that average up include weather/pressure changes, getting sick, or messing with my sleep schedule.

Is this pain-free? Technically, no. But compared to before, when I averaged 28 severe migraine days per month, it might as well be! As a rough measure, I’d say my condition has improved by 80% or more.

So you’re not still doing keto, right?

That’s correct! I did keto for three months only.

What makes three months the “magic number?” The short answer is, we don’t know yet, and it’s not the magic number for absolutely everyone. The doctor who treated me (Dr. Bills at the Migraine and Neuro Rehab Center) shares his theory on this in this podcast (at the 45-minute mark), which is that by three months, the keto diet rebalances insulin receptors in such a way that glucose dysregulation is reversed. He also has a study, currently under peer review, showing that the effects of a three-month keto diet are “durable,” aka long-lasting, in most people.

Why did he recommend keto? How does it help migraines?

Dr. Bills recommended keto because when he gave me a continuous glucose monitor, the data showed that I was experiencing glucose dysregulation.

Glucose/sugar is your body’s primary source of energy, and your metabolic system is what turns the carbs you eat into that energy. Glucose dysregulation is somewhat like having diabetes and hypoglycemia at the same time—your blood sugar changes wildly and in unexpected ways. Dr. Bills just published a research study on this, which observed glucose dysegulation in all 247 chronic migraine participants. The specific form of glucose dysregulation I had was postprandial or reactive hypoglycemia, in which my blood sugar would drop quickly and too much after eating.

Keto helps with glucose dysregulation by switching your body to use fat instead of carbs for energy. In doing so, the metabolic system is bypassed and, effectively, turned “off.” As the metabolic system continues to go unused, your body clears out a lot of its machinery (like receptors on your liver) and rebuilds it from the ground up. So when you start eating carbs again, the system is recalibrated and no longer prone to glucose dysregulation.

This helps migraines because the great orchestrator of metabolism is the brain. The hypothalamus, specifically. In a glucose dysregulation situation, the hypothalamus has trouble keeping up with the blood sugar swings and frequently overloads—an overload which can cascade to the rest of the brain and trigger a migraine. Repairing the body’s metabolism keeps the hypothalamus from getting so frequently into this overloaded state.

What did the three-month keto diet look like?

For the first two weeks, my diet was minimum 60% fat and no more than 15 g of TOTAL carbs per day (not net). For the remaining 10 weeks, it was 60% fat and 15 g NET carbs per day. I was advised to avoid sugar alcohols (erythritol etc) during the three months as well, though I do eat sugar alcohols now.

You can read more about the keto diet here.

Please note that fifteen grams of carbs per day is WAY stricter than keto for weight loss, and it’s hard on the body. For me, I dealt with a severe “keto flu” and had a lot of trouble staying hydrated. This is one of the many reasons to not try this without continuous glucose monitoring data that indicates glucose dysregulation, or without the help of a doctor. Just sayin’.

How long did it take you to feel better?

Week three of keto was the best week I’d had in six years of having chronic migraines. For some, it takes a month or more.

It can’t have been that simple.

Actually, it was. The process wasn’t all roses—more on that below—but follow-up CGM readings have confirmed that my glucose dysregulation went away and hasn’t come back.

How did you STOP keto?

Dr. Bills advised adding 10-20 g of carbs back into my diet every 1-2 weeks. That’s what I did for the first two months post-keto, both of which were more difficult than the months I was on keto. I was wearing a CGM at the time and noticed a few issues:

1. Post-keto insulin sensitivity, wherein my blood sugar would drop too quickly after eating and give me a migraine. This improved with time, but I had to stick it out and keep eating carbs in order for my body to adjust. Eating carbs with a lower glycemic index seemed to help.

2. Generally low blood sugar which resulted in lack of energy and, sometimes, migraines. After troubleshooting with a few different healthcare providers, I stopped one of my medications and started to introduce carbs more quickly. That helped a lot! In hindsight, I wish I would have kept using ketosis test strips to understand when exactly by body switched back into using carbs for energy, and increased my carb count accordingly.

Another issue was gut problems, which came about from eating carbs after not eating them for so long. I added a fiber supplement to help with this.

It wasn’t until four or five months after stopping keto that I had fully reintroduced carbs (up to 100-150 g per day). Though at that point, I was still getting more migraines than I get right now. It took a couple months more for my doctor to figure out that coffee was the lingering culprit, and a few weeks for me to slowly decrease my caffeine intake to one cup per day.

All in all, it was about nine months from the day I started keto to the day I felt consistently, predictably good.

Also note that using a CGM for this part is not “required” and in some ways, not helpful. Metabolism can be altered by any number of factors including anxiety about your metabolism! So as my body was adjusting and being a little unpredictable, I tried my best to use the CGM data only in hindsight, never in real time.

Wow, that’s a long time to recover. Was it worth it?

Are you kidding me?! Even as I struggled to reintroduce carbs, it was a night-and-day difference from how I felt before. Case in point: In the middle of that time, my husband and I traveled to Europe, and migraines didn’t slow me down for even a single day of the three-week trip. And now, my worst days are better than even my best days before, to the point that it’s a silly comparison.

I got my life back, full stop.

Is there a way to do this without paying for an appointment with Dr. Bills?

I’ve heard of some people getting similar results by working with a nutritionist to do keto. Apps like Nourish are a good place to start with this, and are often covered by insurance. Note that with this approach, you’d still need someone to help you diagnose glucose dysregulation via CGM. A good primary care physician or an endocrinologist may work with you on this, especially if you send them the research study (linked again below).

More info...

• Here’s another link to Dr. Bills’s study, and a podcast where he explains a lot of what I just said above from a clinician’s perspective.

• NEW Facebook group for chronic migraines navigating this process.

• My friend Rachel Weaver (who had chronic vestibular migraine) was a participant in study. She wrote about her recovery experience on Reddit and in her recent memoir, Dizzy.

• Here’s an article I wrote about the research and the link between migraine and metabolism.

• Some things I found helpful in doing the keto diet were the MyFitnessPal app, the Keto Life cookbook, and ProMix electrolytes.

• This version of the keto diet mirrors similar diets used for treating epilepsy. So if you want to learn more, try googling “keto for epilepsy” or similar.

Ask me (almost) anything!

I hope I can address your questions in the comments below. I’ll keep track of them and update this post from time to time to incorporate whatever new information comes up.

However, this entire post and the discussion of it is intended to stick closely to the protocol described above. Not because this protocol is the only way out of chronic migraine, but because it’s being actively researched and it’s something I can share about in depth. So, if you have done the exact keto protocol for chronic migraines that I’ve described above—I know there are a few of you who started keto with Dr. Bills after hearing about it from me—please feel free to share anything from your experience that you think would help others! I’ll likewise compile your thoughts into updates on this post.

This post is not paywalled and never will be. Please share with anyone who may benefit.

Love,
Natalie

If you were to ask a friend to describe me, they wouldn’t say “grateful.” Sarcastic, cynical, honest—these are more likely. But grateful? I’ve always thought of gratitude like kale—good for you, but not very appetizing.

There is no need to lecture me about the benefits of gratitude. I’m aware of them. Reduced stress, better mental health, even longer life. And as a Christian, I believe that practicing gratitude likewise yields spiritual rewards. The Bible frequently commands humans to praise and thank God for all he is and all he gives.

Even more problematic are the parts of the Bible that encourage believers to be grateful for suffering. Not the blessings amidst suffering but the experience of suffering itself. *cough* Moving on.

After developing chronic pain, I took extra care to avoid gratitude in all its forms. I scoffed at anyone who mentioned silver linings, scoffed also at the Pass It On billboards that presented inspirational, airbrushed portraits of suffering, and scoffed at God and his mandates to be grateful.

I felt justified in this view because I believed practicing gratitude would diminish my pain in the eyes of others. I didn’t want to give anyone reason to think that I was okay when I wasn’t, or to ignore how much I was hurting. And over time, I built a castle out of this ungratefulness. I felt safer in its dark, stoney halls than I did in the sunshiney world of gratitude.

I often pictured being grateful, though, when I pictured what it would be like to be free of constant pain—something I daydreamed about quite frequently. Maybe this wasn’t a helpful thing to do at the time. I’d been told that my condition was incurable, so what good was there in fantasizing about recovery? But I couldn’t help myself. I imagined throwing a big party for all of my friends, going on an international vacation, and eating all the “trigger” foods I’d been avoiding, like chocolate and coffee.

Then my chronic migraines went into remission.

The months after my unexpected (and virtually overnight) recovery were simultaneously normal-as-can-be and Disney-movie-magical. Or, more precisely, Disney-movie-magical because they were normal-as-can-be. I threw the party I’d dreamed of, went on vacation to Europe, and covered my teeth in coffee stains. But just as amazing to me were the days I wrote for eight hours, walked the dog with no concern for the sun angle, or ran errands without turning into a puddle. It felt as if I’d won the lottery, or been declared queen of the solar system, and I was as grateful as I’d imagined I’d be. As in, unashamedly, uncontrollably grateful.

After those first few months, gratitude got harder.

I first noticed the problem when, at around that time, a friend told me, “I’m so glad you’re feeling better!” This wasn’t my first time hearing this sort of remark—I’d heard it often after I first recovered and hear it frequently even still. But unlike before, my gut reaction to it was one of frustration. Did I need to field these outbursts of gratitude for the rest of my life? I mean, give me a break.

I’m deeply embarrassed to confess this, and I was embarrassed then, too. I knew how indefensible my lack of gratefulness was. After all, I was one of the first people to be cured of chronic migraine disorder. This was, to me, better than winning the lottery or being crowned queen of the solar system. Why, then, was I still ungrateful?

Just as my brain had learned pain over the years, it had also learned to seek safety in my castle of ungratefulness. A castle I probably never needed, and definitely didn’t need anymore.

This month marks one year since my wildest dream came true. I’ll probably never be the type to list what I’m thankful for in a foil-embossed journal. I’ve used the term #blessed exactly once, as a joke. But I’m trying to pursue gratitude in a way that works for me. Like stopping to take in the gorgeous view when I walk the dog. Or consciously enjoying my last sip of morning espresso. Or simply saying thank you to people more often.

Slowly but surely, I’m finding safety in celebrating good things. When a friend rejoices at how much better I’m feeling, I rejoice with them, and I mean it.

I fear that announcing this will encourage you to drown the comments in gratitude. Because how annoying would that be?! But then again, go right ahead. My cynicism shouldn’t be allowed to continue unchecked. Let’s storm the castle of ingratitude with confetti cannons!

I’ll start: I’m so thankful for each of you. I’m not sure what makes you want to read about a random girl’s journey through chronic pain, but I am grateful that I’m not shouting into a void. I’m grateful to be able to connect with you, and for your willingness to connect with me.

As for being grateful for my illness, as the Bible teaches—that is a taller order. The other day, a friend asked me about this very thing: If there were an “easy” button that could rewrite the past, making it so that I didn’t ever have chronic migraines—erasing along with them all the people I’ve met, the love I’ve received, and the ways my heart has softened to the people around me—would I press it?

I don’t think I would. But I would want to. Oh, how I would want to. 🧠

We all have a billion things competing for our attention these days. If this newsletter is adding too much noise to your life, click here (then scroll down) to unsubscribe. No hard feelings, and hope to see you around!

Welcome to all the new Brainees, most of whom likely subscribed under the impression that I’d be writing about my recent recovery from chronic migraine disorder.

I am writing about this. Stick with me for a sec.

I have a migraine today. Or, more accurately, the remains of one. It started two nights ago, mere hours after I emailed my acupuncturist in glee, saying, “I’m gonna cancel my appointment tomorrow!”

The glee wasn’t because I dislike my acupuncturist, she’s wonderful. And, we just took a huge step: We started texting! (She made the first move.) But we are also trying to see less of each other as I move toward the kingdom of the well. This makes for a complicated relationship.

Though by the time this migraine started, someone had booked the acupuncture appointment I’d abandoned in haste and hubris. This left me with no choice but to see how things played out on their own.

I’ve been writing about my recovery from chronic migraines a lot lately. In fact, those of you who recently discovered this newsletter likely did so via this piece in The Guardian, or this one in Christianity Today.

So this is as a good time as any to be honest with you about the messy reality, lest I begin to sound like one of those “healers” who promises to reverse your pain in the three “easy steps” detailed in my “best-selling” book.

I remain in remission from chronic migraine disorder despite this three-day-long migraine, because recovering from chronic migraines is different than recovering from migraines in general. Chronic migraine disorder is defined as having 15 or more “headache” days per month, with 7 or more of those headaches being migraines, for at least three months straight. Now that I’m (usually) below that bar, I have plain-old “episodic” migraine disease, a.k.a. episodic migraines. (There are subcategories of episodic migraine disease, which I’ll ignore here for simplicity.)

Episodic migraine disease is considered incurable. Once a migraineur, always a migraineur. But then again, chronic migraine disorder is also considered incurable, and I was recently cured of that. Do with that what you will.

Regarding being “usually” below the bar: The distinction between chronic and not chronic is slippery, especially for someone like me. When I’m at home and in my routine, I feel great. I forget all about migraines. I fool myself into thinking I won’t get another one, ever. Been there, done that. Moving on!

But during the months that I travel a lot, or get a cold, or am extra stressed, or HORMONES, I find myself flirting with the boundary between chronic and not. What if I had only 10 headaches this month, but they were all migraines? What if I had 15 headaches and no migraines? What “counts” as a migraine, anyway? Seven years into life as a migraineur and I’m still not sure.

This uncertainty is something I’m okay with, to an extent. Thanks to neuroplasticity, or the brain’s ability to learn, I’ve got a brain that’s learned pain. This means, among other things, that removing the physiological cause of my chronic migraines was just the first step. Next comes the hard part: Convincing my nervous system of the new reality.

How long will this take? No one knows.

But the federal government started reviewing my social security case last month. So did my corporate disability insurer. They want to know whether or not I’m disabled anymore. They want me to be sure.

I’m not sure.

My answer depends a lot on when the question is being asked, and over what timeframe, and the definition of disability in use. There are, even from an insurance perspective, multiple definitions. Can I work full time? With or without accommodations? At any job, or only certain jobs? What about part time work? What if I’m self-employed?

Can I write an entire book about recovering from a disease while still being, by some definition, disabled? Does that make me a liar?

Ahem. Not to put too fine a point on my identity crisis of the day.

The answer, I know, is “No.” I’m not a liar. I know how bad things were before, and I know how night-and-day different they are now. So do the people around me.

Whenever I see a friend who I haven’t seen for a while, one of the first things out of their mouth is, “Wow, you don’t look miserable anymore!” This isn’t the best of compliments—imagine, for example, being congratulated for not looking ugly anymore. But I appreciate the sentiment. Hearing this reminds me, every time, to hold on to hope as I fight my way through this long, definition-defying in-between.

This migraine will end (it actually already has, as I wrote this post over multiple days). The disability payment powers-that-be will then render their judgments, we’ll adjust our budget either a little or a lot, and the truth of the situation will stay the same. Which is, disabled or not, everything has changed, everything still is changing, and I’ll be a-okay. 🧠

We all have a billion things competing for our attention these days. If this newsletter is adding too much noise to your life, click here (then scroll down) to unsubscribe. No hard feelings, and hope to see you around!

Hey friends, It’s been a while since I’ve posted an update. I could blame the delay on the fact that I’ve been traveling a lot lately, though the truth is that, since my chronic migraines went into remission, I’ve had trouble knowing what to write here, and how to write about it. I’m very much in the process of recovery in the sense that I’m neither completely sick nor entirely well and I suddenly feel as if I have nothing to say that would be of use to anyone. I hope you’ll be patient with me as I figure out how to find my voice amidst the whiplash that is my life these days. I’m so grateful to have each and every one of you here.

Though I have been traveling a lot lately. I’m writing this post while flying to Denver, on Southwest Airlines. Southwest is, like me, transitioning from the old to the new, though for Southwest, this isn’t an improvement. They will be doing assigned seating by the end of this month, and they are already charging $35 for a checked bag. They’re attempting to soften this one-two-punch-in-progress by offering free wi-fi, but I’m not fooled. Also, the guy in front of me is farting. A lot.

The last time I visited Denver, my hometown and the fast-casual capital of the world, was in 2022, shortly after a severe relapse of my chronic migraines rendered me barely able to leave the house. What a bad time to choose to travel, you may be thinking, and you would be right. On that particular Denver trip, which involved visiting a family member in the hospital, I ended up visiting the emergency room myself, with a terrible migraine.

At around this same time, I visited a friend in New Mexico who’d just had twins, AND my husband Cory and I went on a vacation to Florida. In New Mexico, I spent much of the trip hiding in a hotel. As much as I wanted to be helpful, my overtaxed nervous system recoiled at the prospect of spending that much time around anyone, especially two young babies. In Florida, Cory and I signed up for a snorkeling excursion, only to discover that I was unable to leave the boat. I had, at some point, developed a fear of swimming in the open ocean. Instead of exploring the reef with Cory, I sat alone in a boat, wilting beneath the headache-inducing sun.

The packing situation was also, frankly, ludicrous. Massaging devices, heated blankets, ice packs, muscle creams, white noise machines, bottles of horse pills...the list goes on. And these were in addition to the two largest items I have on every trip: my fancy bed pillow and a foam mattress pad. The pad was because I developed mysterious leg pain shortly after developing migraines, which demanded I sleep on at least two inches of foam at all times. I packed the pillow in those space bags where you suck all of the air out, and a foam pad, too, when I could fit one. When I couldn’t, I shipped one to my destination. And either way, I needed an entire large suitcase for nothing but chronic pain “accessories.” (The leg pain went away when my chronic migraines went into remission, in case you were curious.)

Yet despite the many difficulties and disasters that went along with traveling, I traveled more while in chronic pain than I did in the years leading up to it. I have always loved seeing new places, but what I came to love even more was the possibility of momentarily escaping the hell I’d found myself in. Other chronic pain sufferers I knew said that traveling often helped them—less stress, new environment, etc. I was willing to go anywhere and do anything if it meant I could access a few hours that felt enjoyable, or even just normal. So I kept traveling, hoping that one day, it would feel worth it. One time, it sort of did. Most of the other times, it didn’t.

Now that my chronic migraines have gone into remission, meaning that I’m not in pain all of the time, I am more capable of both traveling and enjoying myself while traveling than I was even just a year ago. So, one of the first things my husband Cory and I did after I started feeling better was plan a European vacation. Having spent much of our twenties and early thirties dealing with my chronic pain, we’d missed out on this privileged young couple right-of-passage, and besides, it felt like a great way to celebrate my remission, despite the odd anxiety around our plans that whirred like a too-loud hotel air conditioner as we booked plane and train tickets.

The trip was to be over three weeks long, which was longer than I’d ever been away from home and the longest I’d gone without acupuncture—a treatment which I, theoretically, didn’t need anymore. But I hadn’t yet tested this theory. We’d also decided not to check any bags, which meant no bed pillow, no mattress pad, and only the most essential of my many “essential” accessories.

I wanted to go, but I was also terrified of us arriving to Europe, only for me to feel miserable in a place that was supposed to be fun. I had, in other words, travel-traumatized myself into a severe case of economy-class, no-extra-legroom, crying-baby-across-the-aisle travel-phobia.

This is a photo of us in the English countryside, four days into our trip. Things didn’t go 100% perfectly—travel never does, unless if you’re rich enough to have a private jet and a butler. The few things that did go wrong were ordinary things, like realizing while on our way to Tirano that the hotel we’d book was actually in Turin (Torino in Italian), or our stomachs going into mourning over the severe lack of vegetables in most restaurants. If you’re considering traveling to Europe, keep in mind that although the food over there is both tastier and healthier, Europeans seem to have no idea what a salad is.

But: I had fun.

This trip to Denver (and then on to New York, for my last MFA residency) is the first solo trip I’ve taken since going into remission. I packed only a carry-on and a backpack, though both are bursting at the seams. And as Cory drove me to the airport, I felt the familiar nervousness settling in. I’d not been feeling great leading up to the trip—my body’s way of experiencing anticipatory anxiety—and as we neared the terminal, the memory of going to the ER the last time I went to Denver came rushing back.

I know I am capable of enjoying this trip. It’s easy-peasy compared to flying halfway around the world. But even still, I struggle to believe I am, just as I struggle to believe I can tolerate computer screens as I sit here typing on my laptop, experiencing no pain.

As I think on it, I realize this challenge isn’t isolated to certain situations in my life. The struggle to believe I can do things that I couldn’t do before is my life. Each new day presents me with a situation that I would have found difficult or even impossible to manage while in chronic pain, and each time I need to decide, Am I ready to try this again?

Sometimes the answer to that question is yes. Other times, it’s no. But most of the time, it’s somewhere in between. Like right now, as I gear up for a couple of flights, many nights spent in uncomfortable hotel rooms, and more socializing than I’ve done in the entire past year combined: Am I ready to try this again?

No, not really. But I’m going to anyway. Because I lost six years to chronic pain, and what I am ready to do is start living. 🧠

The first thing I did after my chronic migraines went into remission was sign off of social media. This seemed like a coincidence at the time—a writer I follow happened to be organizing a summer off of social media and for the first time ever I thought, what the hey?

Having worked for Facebook and then Instagram for the majority of my twenties, I’ve always had a somewhat complicated relationship with social media platforms. In my early days at Facebook in particular, when employees had to use their personal Facebook profiles to message coworkers and collaborate on projects, I was on Facebook all of the time. Even after Facebook launched Workplace, which allowed employees to use a separate profile for their work duties, I still used my personal Facebook account most every day for testing changes to the website.

It wasn’t until 2019, when my chronic migraines forced me to quit my job, that people really started to talk about the evils of social media. I, overwhelmed with the daily demands of chronic illness and hurting from the loss of my career, had no brain space to spare for forming an opinion on the matter. I was also stuck in my house all day and isolated from most of my friends—an isolation which was soon to be worsened by the pandemic. So I didn’t just want social media, I thought I needed it. It was one of the only distractions I had from my nightmare of a life.

But by the time I heard about this summer off social media challenge, life was miraculously, significantly, less nightmarish. I’d just finished what ended up being a curative treatment for my chronic migraines, the amazingness of which cannot be overstated. So, in a moment of clarity, I uninstalled Instagram and Facebook from my phone.

Then I had the most stressful summer I’ve ever had.

One of my favorite doctors often tells me that chronic pain is never a straight line. In the battle against it, some days are two steps forward, one step back. Other days are two steps back, no steps forward. But it’s rarely the case that, in managing a chronic pain condition, you feel like you’re really winning.

Recovering from an incurable disease has felt much the same—not because it is the same, but because my brain often tells me it’s the same. For six years, my brain learned to anticipate pain. My brain would, for example, make me feel anxious at night, because my migraines usually began near bedtime. It would similarly cover me with anticipatory anxiety prior to social occasions, or any plans I’d made to be out of the house. This was a survival reflex, an attempt to warn me of situations that were likely to cause me pain.

Yet after my migraines improved, this fear response did not. It would take the entire rest summer for my brain to catch on to the new state of things. In the meantime, I was in a low-grade state of totally freaked out, *all of the time*. Something as simple as turning on lights in my house, or hanging out with friends—things that used to make my head hurt, but no longer did—would make my heart race in panic. This is a bad idea, my brain would scream, despite the fact that these things didn’t cause me pain anymore. This is, apparently, called an amygdala hijack. Thank you, amygdala.

It was in these moments that I desperately wanted the distraction of an endless stream of random of photos.

But my brain’s survival reflex wasn’t the only problem, nor was it the biggest one. When life isn’t a straight line, it’s all too easy to feel like there’s no way forward, no point in wasting energy trying to get anywhere. Better to just survive. That’s how I’d come to see my life, and the deeper reason why I found myself pining after social media. It was this survival mindset, more so than my brain’s survival reflexes, that had decimated my life and left me, now, unable to live it.

The options to teach my brain to chill out (through things like pain reprocessing therapy, for instance) and to “thrive, not just survive” had always there, pain or no. I made the wrong choice in not pursuing these things earlier, and never pursuing them fully. But now, I knew that if I wanted to truly experience recovery, I had to deal with my fears instead of numbing them with a newsfeed.

So it was, as I said, a very stressful summer. Despite being physically healthy again for the first time in years, I spent most of it battling the fear of pain. But that’s also what made it my best summer on record. Because when I, unable to distract myself from my anxiety with social media, began to work through it, I felt my soul slowly expanding beyond the confines of survival mode. And by the time the summer was over, I was not only physically recovered—I was also well on my way to an entirely new way of living.

It’s October now and though my social media boycott is technically long done, both Facebook and Instagram remain uninstalled from my phone. This is much to the dismay of my dog’s devoted followers. To all 100 of you, I apologize. Maybe I’ll log back on someday. But in this complicated, joyous, messy, roller coaster of a season, I’ve decided to let go of my phone, raise my hands up in the air, and simply enjoy the ride. 🧠

P.S. Speaking of being offline, I’m currently traveling and not checking my phone too often. I apologize for the delay in responding to comments, but please keep them coming!

One final memory from this past summer:

This past summer, I spoke on the phone with a friend who is a pain scientist. I'd originally scheduled the call because I wanted her expert opinion on a particular section of my book manuscript, but when she asked me how I'd been managing my chronic migraines lately, the conversation took a turn.

I was, in fact, not managing my chronic migraines much at all, because there were no chronic migraines to manage. I had just finished three months of what's called the "epilepsy diet"—an extreme version of keto—to treat a metabolic disorder, and I was feeling great. A few weeks after starting the epilepsy diet/keto, I'd stopped getting migraines every day, and now, I could go for weeks without getting a single episode. So by reversing the metabolic disorder, I'd likewise cured my chronic migraine disorder.

That's what I told her, that I was cured. A contentious word, I know, but one I felt that I could claim. After all, my chronic migraines were gone, and I wasn't even on the keto diet anymore.

Her response: "I say this with utmost respect for what you're going through, but—you're wrong."

This doctor's opinion isn't an outlier. Chronic migraine disorder—the thing I claimed to have gotten rid of—is widely considered to be an incurable disease. This is because chronic migraine disorder is categorized as a chronic pain condition and chronic pain, by definition, is the result of something caused central sensitization—a widely-researched phenomenon in which the the nervous system "learns" to afflict itself (and its unfortunate owner) with pain. In other words, a chronic pain doom loop.

Chronic pain being the result of a nervous system gone rogue is what, according to the Institute for Chronic Pain, makes it often incurable (or at least very difficult to cure):

"Chronic pain is pain that occurs in addition to the pain of the original health condition. In fact, the original, underlying condition may or may not have healed. It doesn’t really matter. Chronic pain is pain that has become independent of the underlying injury or illness that started it all."

In other words, once pain lasts for long enough to cause central sensitization (3-6 months, which is often less time than it takes to be seen at a specialty clinic in the first place), experts agree that fixing what originally caused the pain does no good. That's what caused my friend (I'm still going to call her that, you call her what you want) to outright challenge my story—I was claiming that, by removing the "illness that started it all," I had also healed my chronic pain.

My first migraine was ten months long—clearly long enough to get my nervous system stuck in a migraine doom loop. No argument there. But over the years, I'd become obsessed with finding what started my migraines anyway. Doctors, therapists, even friends told me to stop looking for the inciting incident. They all meant well by it—they wanted me to use my energy on managing my disease, not curing it. This was why, six years into having chronic migraines, I still had no idea what underlying issue may have set off my chronic pain, and why. It was an oversight that didn't sit well with me.

If someone were to find the underlying cause of my migraines, how would that not help? It felt like I was drowning in shark-infested waters and being told not to use a life preserver because meh, it won't keep the sharks from eating you in the end.

Toward the end of that sixth year of chronic migraines, I met a doctor who was researching a potential causal link between certain metabolic disorders and chronic migraines. He told me I had one such disorder and that actually, treating the cause could help, only for him to treat that cause with the keto and prove that yes, it truly did. So the successful treatment of my migraines left me feeling more than physically better, I also felt vindicated. Take that, you lousy doctors!

But when this friend told me I was wrong on the phone that day, I began to feel less vindicated and more trapped. I hadn't told many people about my scientifically impossible recovery, because I was afraid of looking like a wackadoodle, and now here she was, essentially saying I was a wackadoodle. And wasn't I? After all, what was my one experience compared to the claims of all the doctors and researchers and pain scientists? You can't say that you've recovered from an incurable disease, can you? Did this one claim make me anti-science? Had I somehow transformed into the type of person who wrote books about coffee enemas and the hidden health benefits of purple foods? Was I bound to set up an Instagram and start selling protein powders and glutathione?

I went home from my office space—where I'd just worked for eight straight hours—feeling ashamed, but also relieved that she'd set me straight, but also amazing compared to how I'd felt for the past six years. In other words, I was very confused.

"Sounds like you got gaslit!" my husband told me that night, after I'd told him I was pretty sure I wasn't actually in remission.

Yes, I said, I suppose I had. And recovery gaslit, no less!

I wish I could say this was the last time I was questioned about my recovery. But as it turned out, the doubts that that experience left behind started a vicious cycle of me being gaslit by…me. Throughout the entire summer I questioned, wondering if I was hallucinating or subconsciously tricking myself into believing that I was better when I, in fact, was not. And just like that, my dream come true would come toppling like a house of cards, and I'd spend the rest of the day feeling like a scummy liar and telling no one anything because IT COULD NOT BE TRUE.

However, not once during those months did my migraines become chronic again.

It's now been six months since doing the treatment, and I remain in remission. This isn't to say that my recovery is necessarily permanent—maybe it will be, maybe it won't be. But that's a problem for future Natalie. For today, the challenge for me is to believe that my recovery is real. All the tension inherent to this reality remains: I don't know how my recovery was possible, I can't explain it fully, and I know that my story sounds, to many people, like an episode of Apple Cider Vinegar.

Maybe there’s something to be said here about cynicism, and curiosity, and the pervasive hopelessness of chronic disease in our society. Why do we accept grim theories as fact and reject joyful facts as fiction? I don’t know. I’m not at the point where I can say much about any of these things. I’m just trying to relish living inside the impossible. 🧠

📣 📣 Announcements 📣 📣

⁉️ Wait, what? That’s right, I recently announced that my chronic migraines are in remission! If you are curious to hear more details, read this post or send me a DM!

👶 Our family is growing! Welcome to the 20 new Brainees who joined us over the past two months. Please say hello and introduce yourself in the comments, or send a DM!

🧐 For those who are interested in staying up-to-date with some of my more “serious” writing, check out my writer newsletter.

🐌 Did you know that paid subscribers are eligible to receive essay posts on real paper in the mail?! Upgrade to paid for $3.50/month or $15/year by clicking here. If you’re a photosensitive person, email oopsmybrain@substack.com for your free upgraded subscription.

I started Oops, My Brain in 2023 as an act of acceptance. At that point, I'd been sick with chronic migraines for four years and told countless times by a variety of doctors that my chances of recovery were zero. Chronic migraine, they said, is often an incurable disease. The best anyone can hope for is effective management, to find whatever balance of lifestyle changes and drugs made it livable.

That balance didn't exist for me. I tried everything (from ketamine to inpatient infusions to elimination diets to pilates), and dealt with the endless stream of setbacks by writing about the humor within them. I hoped that sharing my stories could connect me with others who had reached similar dead-ends in the American medical system, all while helping me come to terms with my fate. And it did both of these things, as this newsletter grew from zero to over 500 readers—most of whom have chronic illness(es) or oopsie brains of their own—and it gave me a sense of purpose when I felt I had none.

Writing a post for Oops, My Brain was often the only thing I did in a given week. Sometimes, I'd draft my posts from bed, or from my couch, ignoring the light coming from my laptop screen for long enough to punch out a few sentences before hiding under a blanket for the rest of the day.

So you get to be the first to know. The first people on the internet, anyway, as the people I know IRL can easily tell: I'm in remission.

Let me be clear. I'm not saying I'm finally managing my chronic migraine disorder. I'm saying that my migraines aren't chronic anymore. A doctor found what was causing them, and that cause was reversible, and then poof. It happened virtually overnight, which was very whiplash-inducing but also very amazing.

In addition to being told remission was impossible, physically speaking, I often wondered if it was possible psychologically speaking. If my pain ever stopped for good, how would I know it had stopped for good? What prevented it from starting again the next day, or the next, or the next? I feared that remission would, at best, feel like camping on the edge of a cliff, waiting for the inevitable relapse. (In the past, I've referred to this as the halting problem of pain.)

It ended up being nothing like that. About two weeks after I started treating the underlying condition that caused my migraines, I woke up early, got in the car, and drove two hours by myself to spend the day at a church retreat. I was expecting to feel drained by the driving, but as I parked at the retreat center in sunny wine country, I realized I felt fine. And shortly after I arrived, I found myself actually wanting to sit in the sun. So I walked over to a bench bathed in light and sat down. And as I sat there I thought, I'd like to take off my sunglasses. So I did, and BAM. The complete absence of pain hit me harder than any migraine I've ever had.

In that moment I knew: I'd been freed from the disease that had imprisoned me for so long. It felt less like camping on a cliff and more like walking through an armored door that slammed shut and locked behind me.

I eventually stopped wearing not only sunglasses but also baseball hats, I stopped wrapping an ice pack around my head each night, and I started turning on the lights in the bathroom for the first time since we'd moved to our new house (which led me to finally hang some artwork in the bathroom).

Today, I am not entirely free of head pain. I still get episodic migraines, and my brain is taking its merry time working its way out of the patterns it was stuck in for years (this is called neuroplasticity). I am also capable of relapsing. But if I do relapse, I know how to bounce back. I have options. It’s a whole different world compared to being trapped in a mysterious problem with no known solution.

Though these physical aspects of remission were shockingly sudden and straightforward, other aspects of recovery have been anything but. My soul was beaten and broken by six years of intense, near-constant pain, and my physical recovery has left a lot of space for the effects of that ongoing trauma to take hold. I do not know when I'll feel totally normal again, or if I ever will. And before you ask—yes, I have a therapist.

I've been agonizing over when to tell you this, and how. One reason is because the Internet is like wet concrete: whatever you write on it solidifies quickly. Even if you make changes later or go back and delete what you wrote, the damage is mostly done. Recovery is proving too dynamic of an experience for such an unforgiving medium. That's part of why I've been sitting on this update. The certainty I had at first wavers more often now; the armored door looks suddenly ajar. This makes me afraid to share from the middle of this journey instead of from the end of it looking back. Why not wait until I'm "totally" better and everything is tied up in a nice bow?

But life doesn’t always give us nice bows, does it? And, as I've recently learned in my MFA program, the most interesting stories start in the middle of things. So I’m taking this leap of faith, I’m writing Remission! in the wet concrete, as a reminder to my future self that I’ve gotten to a place I never thought I’d be, and that I’m moving forward.

This isn't the only reason I've been stalling, though. During the past six years of my illness, I watched many friends go through shorter seasons of suffering, and it always stung when their misfortunes ended and mine did not. It was maddening, and totally unfair, to watch someone go back to their life while I remained stuck in a nightmare. It always felt like losing a friend, or at least losing a part of them.

Now, I'm the one causing the sting.

Spoonies/chronic illness warriors/brain battlers:

It is my greatest joy to know that some of you have been encouraged by the stories I've shared here on Oops, My Brain. Some things about me will change as I move from inside of the experience of disability to outside of it. But believe me when I say I desire to keep my heart in the kingdom of the sick as my body makes its way into the kingdom of the well.

I also want nothing more than to keep writing for you all from this "messy middle" of chronic illness recovery. I have many more stories to share (so many, in fact, that I'm halfway done with a book) and recent events have galvanized me to speak up for the chronic illness community in ways I was too sick to do before. So I'm going to continue writing—both about my past experiences with chronic illness and my present struggles with being in recovery but not recovered—as I chew on some ideas for future directions.

I'd be humbled and grateful to continue having you here. There will always be a place for you.

But I won't deny that I've lost part of my identity as a chronically ill person—the very identity this newsletter was based on. So if you want to unsubscribe from Oops, My Brain (and/or stop your paid subscription), I totally understand. I've listed some other chronic illness Substackers below who you may enjoy.

Love,

Natalie

P.S. I know this post was not funny at all. Don't worry, I am still a funny person.

P.P.S. I plan to write much more about my "impossible" remission in the future. In short, my migraines were caused by a metabolic problem. If you're dying to know more, please send me a DM! I'll tell you all about it. There’s just too much to say in this one post :)

Other Chronic Illness Substacks to Check Out

• Living in a Body by

• You’re Right, I Do Look Tired by

• Unfixed by

• The Bed Perspective by

• Reasons for Living by

• Let’s Art Together by

• Embodied by

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One of the greatest shocks of childhood is discovering that your parents were once your age. It’s difficult to imagine them as anything other than your parents and their lives involving dreams and goals other than the raising of you. 

As a disabled person, I’ve been on the receiving end of similarly shocked looks when people realize that I haven’t always been disabled. My chronic migraines began when I was 27. So not only did I used to work, I used to work for the biggest social network in the world.

I joined Facebook straight out of college, shortly after the company acquired Instagram for the recording-breaking price of $1 billion in 2012. While schemes for world domination were clearly in the works by then—from where I sat at the Silicon Valley headquarters, I could look out the window and see full-grown trees being placed by cranes onto the company’s first rooftop garden—compared to the AI-crazed mega-monster it is today (with historic new hire compensation packages), Facebook was still a cute little app. Their campus was still less than ten buildings (it is now over 30), and their CEO still looked like an ad for gray Hanes Beefy-T’s. 

After a few weeks of Facebook’s new hire “bootcamp,” I joined an infrastructure team that focused on making data centers resilient to things like power failures and natural disasters. I had no idea what this entailed, but it sounded cool. On my first official day on my team, as I settled into my very first desk, I noticed a poster, printed in all-caps with orange block letters, on a nearby wall. It read, Be Bold—one of Facebook’s primary mantras, second only to Move Fast and Break Things. 

As a 21-year-old new grad who barely passed many of my computer science courses, not to mention my new team’s first female employee, I didn’t feel very bold. But my manager believed that boldness was a skill that could be learned, and he made me speak up in meetings and work with engineers twice my age until I learned it. Slowly but surely, boldness seeped into my bones. By the end of my third year at Facebook, I was a senior engineer who had forced my way onto a high-priority project, a coveted presenter and mentor, and no longer the only woman on the team. 

Then I got migraines, left Facebook, and ended up in a career that paid negative money, had no free snacks, and didn’t seem to value boldness. 

Anyone who has ever visited a doctor’s office can attest: the Western medical establishment is designed for passive patients. Those who want to participate in their own care simply don’t fit into the confines of fifteen minute appointments, one-size-fits-all doctors, and endless medical bureaucracy. So for someone like me who is accustomed to speaking her mind and generally getting things done, most medical “processes” are bewildering to the point of frustration. 

Take, for example, the process of getting into a headache specialty clinic when I first got sick. It took two months just for me to be added to the waitlist, because every referral I had sent to the clinic was swiftly and mysteriously closed. The reason? I had a prescription for opioids, because they were the only thing my primary care provider could give me that worked against my debilitating headaches, and the clinic was part of a federally-funded hospital that refused to see patients who took opioids. So, until my situation improved enough for me to get off opioids, I was to be denied entrance into the very clinic that would, assumedly, provide me with a safe and effective alternative to opioids. 

But the clinic told me none of this, not even when I asked for an explanation. In the end, I got onto the clinic’s waitlist by finding a doctor who guessed what the problem was, then pulled a few strings behind the scenes.

Situations like these are difficult to navigate, especially when you’re sick and/or in pain. So when it comes to medical self-advocacy, I am not always as bold as I’d like to be. But whenever I can muster it, my boldness proves to be, time and again, my most transferable Facebook-acquired skill. (My skills in data center architecture have, oddly, proved far less useful.)

DHE is both a migraine drug that, despite being a cousin of LSD, causes no fun hallucinations. Instead, it causes nausea, muscle aches, dizziness, and a variety of other gross side effects. So it is only people with nasty headaches (such as myself) who are willing to be admitted to the hospital to receive three infusions of DHE per day over four days—that infusion schedule is called the Raskin Protocol. 

DHE is delivered through a special type of IV that goes very deep in the arm and is notoriously difficult to insert properly on the first try—especially at an understaffed, urban hospital that only has one nurse who is trained on them—making someone like myself, who gets dizzy at the mere thought of blood, likely to faint. And, during the four days of treatment, you’re not allowed to shower, wash your hair, walk around, go outside, or go to the bathroom by yourself. Also, if the hospital notes your dietary restrictions incorrectly, you are relegated to chicken broth for the entire week. Ask me how I know.

After my first two rounds of DHE, I asked my neurologist, half joking, if I could do DHE differently next time. Dr. Raskin was a smart man, I assumed, and he was also the founder of the headache clinic I’d fought so hard to get into in San Francisco. And yet both of the weeks I’d done DHE treatments had left my body feeling battered for months, and I was dreading the possibility of needing to do them again.

“What would you change?” my neurologist replied. She’d assumed I was serious. So I thought back to the Be Bold poster by my desk at Facebook HQ, took a deep breath, and began listing my demands.

People often ask me if I miss working for Facebook. The short answer is no, as only after leaving tech did I come to realize how little I enjoyed most of the day-to-day tasks. But there is a longer answer to this question. Because while I do not miss running load tests on data centers or troubleshooting why an Instagram influencer’s message inbox is broken (I spent my last year there working for Instagram), my stint in the software engineering world did give me what I needed to negotiate for a less taxing DHE infusion schedule, a nurse who gave me Ativan before getting my IV in on the first try, permission to use a portable stationary bike in the hospital, an Apple TV in my room, and the procurement of a mini fridge to keep Natalie-safe snacks nearby. In hindsight, I also should have also asked for a microwave.

I was the first person my neurologist knew of who had customized a hospital stay so extensively, and I was glad I did. Doing so taught me that, despite having a body that so often spins out of control, control over my medical care—and my mental and emotional health along with it—is there for the taking. And no matter how oppressive the medical system feels, there is space for our humanity within it.

So remember, if you ever find yourself hospitalized for headaches—which I hope you never do—ask for the Mead Protocol. 🧠

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Opening Gambit

Show me where the migraine is, the massage therapist says as she leads me past a canvas curtain and into a room with a Himalayan salt glow. She clearly read the new patient intake form I’d filled in an hour earlier on my phone, while sitting in the Chipotle across from my hotel in Manhattan. (I was in too much pain to risk a culinary adventure. Best to have the ingredients right where I could see them.)

I turn back toward the therapist, who is standing in the doorway, and point to both my temples. 

That’s not a migraine, she says. Her nose is round and drawn tight into her face, as if disgusted at my ignorance. Migraines are only on one side. What you’re experiencing is a sinus headache.

That’s a bold opening move, one I don’t see very often. Do I correct her, or let it lie? I make a split-second decision in favor of a good massage.

Okay, I respond. I try to say this simply, unconcernedly, like an eager-to-please kindergartener absorbing indisputable facts from an all-knowing teacher. Two plus two is four, the sky is blue, I don’t have migraines.

Your forehead looks swollen. My friend’s daughter used to have headaches and had a swollen forehead, too. The doctors did an x-ray and found a bunch of rot in her sinuses, then they did this surgery where they peeled her forehead down past her eyes so they could pull out all the gunk. She had no headaches after that! So anyway, probably a sinus issue.

That’s wild! And also terrifying, the thought of a literal facelift. I know what my nightmares will be about tonight.

How long have you had this sinus headache?

Six years.

Six years? Her mouth opens slightly. Straight?

Yes, straight. Though my pain hasn’t technically been constant, just mostly constant. It also hasn’t been six years—more like five and a half. But as a woman with a chronic illness, I’ve learned it’s best to simplify the situation. As a frequent user of the ten-point pain scale, I’ve also learned it’s best to round up.

Do you ever get nauseous or dizzy when you get a headache?

Yes, pretty often. I sit down on a nearby chair and try to look preoccupied with removing my shoes.

Oh. Well, maybe you do have migraines. She looks deflated by the possibility.

Maybe, but I’ll for sure look into the sinus headache theory! I say, feigning enthusiasm. 

Her nose relaxes slightly. I put on a game face disguised in a smile.

Midgame

Twenty minutes into the massage, and she hasn’t even gotten to my head yet. So, she controls the board. It’s at around this time that the conversation gets to where we both know it’s been going all along.

I used to have migraines, the massage therapist says. For twenty-five years. 

That’s terrible! I say, because it is, but also because this is my line.

That’s why I went into massage therapy. To help people in pain. 

Wow, that’s so nice of you. I’m certainly happy to have your help. I’m so glad I found you. Was that too much? Maybe. Probably. But really, half the masseuses in the world used to have migraines, and their ability to help people like me in any lasting way is limited. But I don’t say this. I’ve already chosen my strategy.

I’m happy to help! she says. There is no worse pain than migraine, after all. Except for cluster headaches, that is. She’s trying to look humble, maybe also encouraging me to put things in perspective. She doesn’t know that I’ve gotten cluster headaches before, multiple times. While hospitalized. For weeks. I know well the type of pain that makes you want to black out, pain that feels like it will end in death.

Another decision to make—do I say this? Whose pain should I diminish at this moment, hers or mine? Mine. Always mine. I stay quiet.

Endgame

The massage therapist turns me over, then digs her thumbs so hard into the back of my head that I want to cry. This is a good thing. I’m trapped beneath a frozen river and she’s chipping away at the ice until it yields and disintegrates beneath her targeted pressure. I’m looking forward to a painkiller-free night, and I begin to wish I’d booked a longer session. 

I feel her hands leave the back of my head and go…wait, where did they go? 

Then she asks, Can I give you some advice? 

There’s only one right answer to this question, which means I’m in check.

Sure, I say, raising my voice slightly to make up for the face cradle. My increased volume could, of course, be interpreted as enthusiasm. 

I want to tell you what I did to cure my migraines. It’s so simple you’ll be kicking yourself. 

Okay, I say with a flatlined facial expression that she cannot see and, hopefully, cannot hear.

I found this special water. Her fingers touch back down and start rubbing behind my ears. My belly relaxes into the warm table. 

Like electrolyte water?

No, not electrolytes. Just small.

Small?

Yes, small. Like microscopic. Small enough to fit into the mitochondria in your cells.

Oh!

I’m telling you, it cured my migraines.

I believe you. Sounds interesting.

Can I email you the info after? I’ll give you a discount code.

Of course!

Checkmate

A few minutes later, she offers to extend the massage. 🧠

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There are five movies (and counting) based on the 1956 novel 101 Dalmatians by Dodie Smith: the animated 101 Dalmatians and 101 Dalmatians II: Patch’s London Adventure, the live action 101 Dalmatians and 102 Dalmatians, and the recent Oscar-winning prequel, Cruella. Though there are, oddly, zero movies based on the book’s sequel, The Starlight Barking, a story which involves all humans falling into a deep sleep, flying telepathic dogs running British Parliament in their stead, and Sirius, the Lord of the Dog Star, coming down to earth to offer all canines a place in his utopia so he can save them from impending nuclear war.

Despite Disney’s blatant disregard for The Starlight Barking and, therefore, the only true 101 Dalmatians universe, we recently decided to watch all five Dalmatians movies. Why? Dog training. 

After the sudden loss of one of our dogs last May, my husband Cory and I decided we were ready to get our first-ever puppy. We compared our lists of preferred breeds and found only two we agreed on: Dalmatian, and Basset Hound. Two breeds so different from each other, it’s hard to believe they are members of the same species. Basset Hounds are long, barrel-shaped dogs with stumpy legs, and droopy features. Dalmatians, on the other hand, are lanky, lean, and “high-energy.” 

We agonized over the decision for months, Googling pros and cons, pitting the cutest pictures from r/Dalmatians against the best of r/BassetHounds, and eliciting the opinion of our other dog, Donut (who, as a hermit, was vehemently against both options). Most of our friends, however, immediately told us to get a Basset Hound, and all for the same reason: You’re Basset people. 

In the opening scene of the original 101 Dalmatians movie, the main character Pongo watches women walk their dogs past his front window—a redheaded artist with a redheaded Afghan Hound, an aloof woman in a brown dress walking a similarly aloof brown pug, a glamorous lady and her poodle (with matching sparkly hairdos). It’s a nod to the commonly-held belief that people often look like their dogs. 

There’s no Basset Hound in this scene, but I can’t help but wonder what the owner would look like if there was one. I imagine someone shuffling lazily down the street with bloodshot eyes and baggy clothing, drooling.  Was this what our friends meant by Basset people? 

I never imagined that picking a dog breed would involve so much soul searching. What at first was a choice between long ears and short, howling and barking, patches and spots became a choice between warring aspects of my identity. Wasn’t I a funny person, a goofy person? Didn’t I love adventure and the outdoors and generally “high-energy” activities? I thought of myself this way, but how long had it been since I actually was this way? Not to blame everything on chronic illness (then again, why not?), but I began to wonder if what our friends were actually calling out was the fact that our personality as a couple had changed since I’d gotten migraines. We were both constantly depressed, after all, and had been for the past six years. How could we not be? I’d so far lost my job, some friends, and all of the most stereotypically adventurous years to chronic pain. Life, for us, was all about coping.

And what about me as a person? No one likes to admit that our circumstances are capable of changing who we are deep down, but aren’t they? Isn’t that Cruella’s backstory in a nutshell? So I had to allow the possibility: Maybe my migraines had changed me. Maybe I was now a Basset person.

It was hard to say for sure, however, without first meeting a Dalmatian. Basset Hounds were common enough, but neither Cory nor I had even seen a Dalmatian in real life. Did people even own Dalmatians? They were actual dogs, right? Not just made up for the purposes of the movie?  

We drove to a Dalmatian breeder last summer to find out. While there, the breeder introduced us to her many beautiful Dalmatians, and told us that it wasn’t at all strange we’d never seen Dalmatians before. Lots of people haven’t. When the original 101 Dalmatians movie came out in 1961, everyone and their brother suddenly wanted a Dalmatian, which led to overbreeding, which led to health problems and behavior issues. The resultant poor reputation of the Dalmatian caused the popularity pendulum to swing in the other direction. Dalmatians were, therefore, booted out of the zeitgeist, which was then promptly re-saturated by Labradoodles and Cockapoos.

Perhaps needless to say, we were smitten with the Dalmatians. On that visit, we discovered Dalmatians have the softest coats of all the dog breeds. (Cory’s number one concern going into this visit was that Dalmatians “wouldn’t be soft enough.”) They were also very happy, which was so unlike us in the best possible way. Some of them were crazy, too. High-energy. But some of them were not, and all of them made us smile. 

That day, we decided to join Team Spots. Maybe by choosing a dog unlike us, we’d find a piece of ourselves we’d lost. But if not, at least we’d have a really soft, happy dog to distract us from what was missing.

We knew it would take some time for us to get a Dalmatian puppy, as we wanted to work with a reputable breeder and find a dal that would do well with our urban lifestyle, but it was time we needed. Due to my limitations, we took extra care to have everything ready, and to have a plan for caring for our new family member through difficult seasons1. Shortly after our “puppy nesting,” we saw Sunshine’s photo for the first time, and everything took off. Within a week, she was sitting on our couch, bobbing her head to a Taylor Swift song (“You Need to Calm Down,” because, well, she needed to calm down at that particular moment).

 Other things we’ve learned about Dalmatians since owning one: they have the smelliest farts, they shed a LOT, and they like sleeping under the covers with their legs sticking straight up in the air. (Yes, we are letting her under the covers. That was a losing battle. But she doesn’t sleep in bed with us all night!) They also like going outside, which forces us to go outside and enjoy both our neighborhood and our many wonderful neighbors.

Did getting a Dalmatian infuse me with energy or reduce my pain? No. I’m still sick, life is still hard, and we probably still look like Basset people. Our circumstances shape us, and I remain stuck in the circumstance of migraines. But a few months back, I heard an author speak about how newness changes the brain. Even the most minor excursions away from the worn-out tracks of our daily lives can have positive effects on our moods and outlooks, she said. I’ve felt this firsthand since we got Sunshine. She doesn’t fix anything (in fact, she breaks lots of stuff), but she is a nice change of pace, and her happiness definitely has telepathic brain-changing powers.

One day, maybe we’ll be Dalmatian people. Or at least Bassmatian people. But in the meantime, we’re having a lot of fun with our totally-unlike-us doggie, who, thanks to our recent movie marathon, knows everything she needs to know about how to avoid being made into a fur coat. 🧠

P.S. Sunshine is seven months old now. For more recent photos, check out her Instagram.

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In this entirely unscripted conversation (Mimi’s idea, not mine!), we chat about attractive brain surgeons, badass moms, balancing humor with harsh realities, and so much more.

Give it a watch or check out the transcript below. Just keep in mind that I have NEVER edited a video before. But it’s fine, really! The hiccups only add character.

Natalie: Hi, Mimi! 

Mimi: Hi, Natalie!

Natalie: I don't know if everyone who would be watching this, listening to this, would even know what a brain injury is, so could you sum up what your experience is?

Mimi: Yes. I am not a traumatic brain injury, I am an acquired brain injury, which just means that I wasn't hit in the head, but it was rather a structure within my head, a clump of cells called a cavernous angioma. It was probably there my whole life, just chillin and for whatever reason, it hemorrhaged. The first time—spoiler, it happened twice—it happened in 2014, and I was 22. And it honestly felt like a really bad migraine. I hadn't hit my head or anything. I was, honestly, on a blind date, like a Tinder date, and I had a migraine and didn't know at the time what it was, and it actually took us a few weeks to get it diagnosed as a brain bleed.

The cis hemorrhage was like my slow leak, so over the course of about a month after finding it, I was on bed rest because these bleeds can grow and shrink like a balloon. It doubled in size and by that point it was time to extract it. So we did a brain surgery, which was more of that traumatic impact on the brain, but yeah, it's technically an acquired brain injury. But yeah, brain surgery when I was 22 years old, wild ride, had to relearn how to walk and see, and I was in rehab for a few weeks doing all these fun things. So that was number one.

The second one happened in 2023 and same thing—I was with a man. I'm sensing a trend here! I had another migraine and we found a second bleed in the same place, so that one's been here ever since, and has stabilized for about a year, so I just get into an MRI machine every six months and they take a look at it and make sure it's not getting that big again. 

Are you a TBI? [Traumatic Brain Injury]

Natalie: No, I'm not. I have chronic migraines of unknown origin, but they were very sudden onset. This is perhaps similar to your experience in a way, because I think most people who get chronic migraines have migraines before they become chronic. It's like a gradual build. But in my case, my first migraine lasted ten months and it took me about two months to figure out what it was because I'd never had a migraine before. So similar to you where I was just like, I have no idea what's going on. And from that point on, I've had very frequent migraines So it was a rather strange situation that wouldn't technically be considered traumatic because there wasn't any physical contact involved, but it was very sudden.

Mimi: And they don't know why this is happening?

Natalie: The question of why has never been the most important question to any doctor I've spoken with. For migraine, at least, the answer for why is just because you have migraine, and because it's an inherited disease if you have it, you have it. I don't really buy that. 

Mimi: No, I don't either. That's ridiculous!

Natalie: But I'm sure that, the why question comes up for you a lot too. Why did your brain just decide to freak out and start bleeding? 

Mimi: Yeah, we had to really fight for that diagnosis, because I was misdiagnosed several times over. The first one was my own doctor who I was going to see for a different reason and she had me walk in a straight line and I was like, Something's going on. I felt different. I felt strange. Even after the migraine kind of fizzled out, things were different. She essentially told me I was young and healthy and asked me if I'd been through a breakup lately, which I had, a big one.

She prescribed me Valium, which could have killed me had I taken it, but my mom was not having it. My mom was a very active part of the diagnosis process because she also knew something was wrong. She was going with me to all these appointments, because she knew something's going on, we’ve got to figure this out. Then there was an urgent care, then there were two ER visits, and one of them there was a neurologist who did the finger test and I was reporting like four of his finger over here where there was only one. And he looked at my ears and said they were all plugged up. What was he seeing? Like earwax? I have no idea. So then they sent me home too. And then, we went to another ER and my mom was like, we're not going to leave until they find something. I don't care. We're just not gonna leave. We're just gonna refuse to leave. They can drag us out. 

So the nurse came in and did the finger test, but she was doing it wrong because she only put it here. When it was there it was fine, there was only a problem on the side. So my mom literally stepped in front of her and said, No, you're doing it wrong. Then we waited for the MRI, finally got the MRI and they found it. I feel for people like yourself who don't get answers and are told oh, this is just the way it is. You're told to accept it or you're gaslit or someone, even a neurologist who's doing an exam can't pick up that you're having what I think is an unmissable stroke symptom.

So you really have to take your power back. I would say something my mom told me. She said you have the most power when you're in the hospital. You don't think you do, but you do. They have patient advocates there. They have people whose job it is to make sure you get what you need.

And, funny enough, they actually offered my mom a job as a patient advocate! They're like, you're really intense. You're really crazy. You could have a career here if you wanted to. She never took it. But I fear for people that don't have that kind of support in the hospitals or just talking to doctors who just dismiss them, left and right.

Natalie: Totally. First of all, go mom!

Mimi: She's a real awesome lady, for sure. 

Natalie: I've definitely had my fair share of run-ins with ER doctors in particular, because there's… it's taken me a while to figure out what exactly the problem was, but there's insurance stipulations for admitting people to the hospital if they come with a complaint of a migraine.

Mimi: Really? 

Natalie: Because there is nothing to do other than treat the migraine. And so I had many times that I would come into the ER with a migraine and I was unable to stop at home and their response was always just giving me the same few painkillers available in the ER and if they didn't work they would just send me home.

Mimi: Yeah, it's just so frustrating. I think for women especially. I spoke to this man was a medical ethicist and I was asking about why a lot of this was happening. And he was like, they are training doctors and ER nurses to not order MRIs and to not allow hospital stays. And so they'll do anything to not have to do those two things. Which is very scary.

I do count myself lucky, though, because in all my travels, when I finally had that second bleed, I was back here in Colorado. And it just so happened that my brain surgeon was also back here in Colorado. I also have a crush on him. He is a lot older than me, but I think this is something called White Coat Syndrome. Essentially you fall for the person who takes care of you because you're like oh my gosh you're the first person to actually listen to me and tell me I'm not crazy. I like to think it's not impossible. I have not seen a ring on his finger. As far as I know, he's still single.

Natalie: Since your first brain injury and all through these many years, what's been one of the hardest things and what's been one of the funniest things? 

Mimi: Hard thing is probably that I've always been doing so many things since I was a kid. I was doing theater and hockey and I had friends and I was doing this and I was doing that. And my parents call me the girl with her hair on fire.

I'm not technically a redhead. I'm close. But really they mean that to be like, you just can't sit still. You like doing everything. I have a really hard time slowing it down even now when my brain is no. I took a nap right before this and I'm still coming back online.

And, managing my schedule and just over committing myself. Sometimes I have a really hard time with that. When my body says No, we can't keep up with that pace anymore. That's really hard.

Funny…it's all pretty outrageous. Having a crush on my neurosurgeon, that's pretty funny. Just the lack of functionality sometimes and being on stage a lot, I like to lean into my mistakes and my flaws. I used to not do that.. I used to be really…I didn't want people to know I was brain injured on stage. But now I'll let myself get distracted. If I hear somebody in the front row, ordering a drink, I'm like, Oh, you're getting a margarita?? Okay, cool, good choice. I like to interact with them instead of trying to be perfect and sticking to my routine and not going off script. Now it’s like, I broke the microphone, it happened. I tripped on stage. I can't remember a word I was going to say, or I said the wrong word. I just let myself go with it because I think people appreciate it and it's more true to who I really am than trying to be this perfectly polished version of myself.

What, for you, has been the most interesting thing that you've discovered about yourself since yours?

Natalie: I think that in many ways my migraines taught me that I had a sense of humor. I thought I could be witty beforehand and whatnot, but I started surviving by finding things funny. There was really no other choice. Other than just like getting extremely depressed, which happens from time to time. But it was just like the way I got through the day, and that's really changed my outlook on a lot of things. 

Mimi: I also like to remind people, I was not a comedian before. I did improv, but I would never have called myself a comedian. I would never have called myself a writer or filmmaker or any of these things. So having the experience created that career for myself. And it was in little moments of making jokes to the nurses in the ICU, saying something inappropriate because I had no filter, crushing on my neurosurgeon. You do those things to get through the unthinkable. 

Though what I've really found, which is my whole TED talk, is the trauma will catch up with you. A lot of people did not like my TED talk. I said, go to therapy and they were like, she's not funny! I appreciate that it's really hard for people to hear that. They think Oh, I can't just totally laugh it off. And you can, you can, but, in my experience anyway, trying to just be funny about it 24/7 had a bit of a cost down the line, which I knew even before I had the second bleed. So definitely the second time I was like, Oh, I have to deal with my fear of death! I had to settle with that because I didn't do that work back there. I skipped it, which is okay. It happens to a lot of people, but yeah, that's the main message of the TED. “Laughter is Not the Best Medicine” is what it’s called.

Natalie: I'm glad you brought this topic up because I think that there is always a temptation to put your happy face on when you're going through something difficult.

Mimi: I was just using that as a way to cope, right? And having compassion. But yeah, I had to rewrite my whole book, like several times over because I had to be more honest with myself and be like, Oh, no, you weren't laughing! You were really freaked out. 

Natalie: I did the same thing at the beginning of my migraines as well. Because I mean you don't have a space in your brain to think about what is the most healthy way emotionally to go about this experience? You're just in survival mode. So I was powering myself on these gags. Because the hospital system is so funny anyway. It did take a while for all the grief to catch up with me, but it certainly did.

Natalie: One final question for you would be, what do you think is the number one thing that you would want people to know about brain injury or invisible disability?

Mimi: Trust what we say, and when we tell you how we feel, listen to us. Give us grace and patience, because we may look a certain way, but you just never know what someone's going deep down. And it's okay to ask Hey, how are you doing? Is it too loud in here for you? Do you need a nap? Ask me that. I would love for people to tell me that that versus, Yeah, you should figure it out. You're fine. That kind of thing.

One fun fact about Mimi that didn’t get into the video: She’s working on a documentary about life with a brain injury which involved having a crew film her during migraine attacks. Now that’s taking awareness to the next level. Gold star, Mimi! 🧠

Please give Mimi a warm Brainee welcome in the comments! And if you have a recommendation for who I should interview next, please reach out.

Learn more about Mimi:

• Watch her TED talk!

• Read her book!

• Follow her on Instagram and Substack!

Ask my older sister and she’ll tell you, I’ve never been much of a shopper. So when my husband Cory and I had a few minutes to kill while on a vacation in Hawai’i last year, we browsed the souvenir shops halfheartedly, each of us waiting for the other person to drop so we could finally go for our daily infusion of shave ice. But that day, we both got lucky. Cory decided to buy a mug shaped like a whale, to use as a succulent pot, and in the exact same shop, I found a baseball hat with a chicken on it.

The few of you who have seen me in person can attest to the fact that baseball hats are my thing. I wear them every day that I’m away from home, both indoors and out. As a result, I can list many close friends who have never seen me not wearing a baseball hat. 

I didn’t own a single baseball hat before getting migraines. After getting them, one of the first things I noticed, other than the debilitating pain, was that I was constantly squinting. All ceiling lights were suddenly too bright, and the sun reflecting off of rain puddles was even worse. So, the fact that it took me a full year to consider solutions to this problem says a lot about how overwhelming the beginning stages of chronic illness are. 

The literal light bulb moment came when I was standing in the Joshua Tree National Park gift shop after a full day of walking around in the sun, grumbling about the bright light bulbs in the shop. As luck would have it, I happened to be grumbling next to a rack of hats. 

Photophobia, or light sensitivity, remains my greatest day-to-day struggle as a chronic migraine sufferer. Though “sensitivity” is far too flimsy of a word, in my opinion. Saying I’m light “sensitive” is like saying a can of gasoline is sensitive to a match, that bacteria is sensitive to penicillin, or that my nose is sensitive to my dog’s farts after she eats too many fish-flavored treats.

What I’m trying to say is that photophobia is a heck of a lot more than an inconvenience—it’s more like an electric barbed wire fence wrapped around my entire world. There is no good time of day for a photophobe, because humans are downright obsessed with light. For starters, there’s this big ball of light that everyone positively gawks over. “What a gorgeous day!” “Isn’t it beautiful?” “We should really go outside!” Going outside, for me, requires not only a baseball hat but also wrap-around sunglasses that make me look like a space invader. I don’t like walking much before or after noon, because then the sun is too low and sneaks through the edges of my sunglasses. I also don’t like walking on the beach, or on wet sidewalks, or near cars. The reflection off a Tesla roof is enough to send me scrambling for home. Thanks, Elon.

Nighttime is, oddly, even harder. This is because during the night, instead of one bright light that traverses a predictable path across the sky, there are lights on buildings, lights on sidewalks, lights on heads and bikes and cars and buses and trains and planes. Some of these lights are even motion-activated, which I think should be illegal because they’re a form of false advertising. But car headlights are the worst, hands down. Whoever designed sports cars in particular seems to have missed the memo on headlights being for seeing the road, not blinding everyone within a ten-mile radius.1

I recently traveled to New York without Cory, for my MFA program. Traveling alone isn’t something I do very often, meaning Cory isn’t often alone at home. His favorite thing to do when living as a bachelor? Turn on all of the lights! Because other than giving me a low-grade distaste for every waking moment, photophobia has also made me into an anti-social, unadventurous mole person. When invited to a friend’s house for the first time, I tend to interrogate them about their ceiling lights beforehand. I’ve even requested photos, because anybody with ultra-bright track lighting is no friend of mine. It’s best to cut those relationships off sooner rather than later. But when I don’t have such foreknowledge, social invitations must be weighed against my patience for unknown lighting situations. Will there be spotlights in this art gallery? Fluorescents at the restaurant? A disco ball in the church? (As unlikely as this may seem, I’ve been in not one but THREE churches with operational disco balls.)  Is this the sort of thing where I could bring my own lamp, or would such an action be frowned upon? And what about those people who can’t be trusted with phone flashlights, will any of them be there? You know the ones, they have lazy thumbs and are all too prone to accidentally turning on their little iPhone death rays when trying to pull up videos of potty-trained cats. It is impossible to prepare for every scenario, impossible to guarantee soft, steady lighting everywhere I go. Decisions must be made and social calendars, curtailed.

The only place that’s 100% safe is home, aka The Haunted Mansion. I call it that because it’s usually (whenever I’m around) quite dark in our house and because all the lights can turn bright green, like the color you’d get if you mixed frog toes with lizard tails. Cory set it up that way. For warm white, you flip the light switch on once. For green, you flip it off then quickly back on again. We have the green light option because, for reasons that scientists have yet to put in layman’s terms, green is the best color of light for migraine sufferers such as myself. Your skepticism at this statement is understandable, because we all know red light is best for night vision and the like. But, having a wealth of firsthand experience with chronic migraines, I can personally attest to the fact that when it comes to artificial light, green feels better than red and way better than white. (As limited proof of my claim, note that there are actually green light products marketed to migraineurs.)

But in the end, there’s no light like no light. That’s my motto. On that note, use our dishes at your own risk. They were washed in the dark. 

I wore the same Joshua Tree National Park hat for months and months before eventually deciding to expand my collection of long-brimmed headgear. By that point, I’d discovered the myriad advantages to having baseball hats as a personal trademark. You never need to do much with your hair, for starters. Hats can also make you look either easily recognizable or totally standoffish, according to your preferences. If I want someone to be able to find me in a crowd at the airport, for example, I wear a quirky, one-of-a-kind hat. (While the chicken hat is my current favorite, I also have a dog hat, a cactus hat, a tie-dye hat, a Highway One hat, and a hat I designed myself with a migraine emoji on it.) But if I want no one to talk to me at a networking mixer, nothing says “buzz off” better than a black hat tilted down over the eyes.

There’s also, of course, the fashion mystery factor. A few years ago, when first learning to write, I discovered a famous writer with a similarly notable fashion quirk. Joan Didion, a hugely successful journalist and essayist, was known for wearing sunglasses everywhere she went, including indoors. In her memoir The Year of Magical Thinking, she even talks about wearing sunglasses for the ENTIRETY of her wedding day. But she doesn’t ever, in any of her work, come out and say why. In an essay about her fashion choices, Didion makes a passing mention of sunglasses, and in one of her more famous essays, “In Bed,” she talks about her frequent migraines. (Thousands of people have asked me if I’ve ever read this essay, thinking that they have, by reading this two-pager, uncovered something I’ll find groundbreaking.) But neither essay actually explains her affinity for tinted eyewear.

Was Didion a glamorous fashionista, a photophobe, or just weird? She’s dead now, so we’ll never know for sure. One thing we do know is that Didion’s trademark dark glasses made her look mysterious, this sense of mystery made her iconic, and her iconic persona only added to her fame. As for me, nothing says mysterious and likely famous writer like a red baseball hat with a yellow chicken on it. Don’t you think?

There is, however, one downside to wearing hats, which you should be aware of before adopting the Natalie Mead look. If you have a rather impressionable forehead, as I do from far too many Botox treatments, you need to wear hats all of the time, to cover the big, ugly indent on your forehead from whatever hat you most recently wore. 

It’s a vicious, vicious cycle. 🧠

📣 📣 Announcements 📣 📣

👶 Our family is growing! Welcome to the 44 new Brainees who have joined us over the past month. Please say hello and introduce yourself in the comments, or send a DM!

🧢 Jealous of my migraine emoji hat? I thought you would be. You can buy your own here.

🎧 You can now find essay voiceovers on Spotify and Apple Podcasts. And my new mic is up and running so it even sounds nice!

🐌 Did you know that paid subscribers are eligible to receive essay posts on real paper in the mail?! Upgrade to paid for $3.50/month or $15/year by clicking here. If you’re a photosensitive person, email oopsmybrain@substack.com for your free upgraded subscription.

It’s far too easy to get tongue-tied when faced with someone else’s struggles. Heck, I’m in near constant pain and I still don’t know what to say to my friends when they’re hurting. I don’t want to say the wrong thing, but I do want to say something. I want to show I care. It’s a prickly pickle of a problem!

I recently chatted with the world’s foremost expert on emotional intelligence about this. Here’s an excerpt from the interview.

Me: What do you say to someone who is hurting?

ChatGPT: When someone is hurting, it's important to approach them with empathy, patience, and compassion. Here's a thoughtful way to start:

- Acknowledge their pain: "I’m really sorry you’re going through this. I can’t imagine how tough it must be right now."

- Offer support: "I’m here for you, whatever you need, even if it’s just to listen."

- Validate their feelings: "It’s completely okay to feel how you’re feeling. It’s normal to struggle sometimes."

If they seem open to talking more, asking "Do you want to share what’s on your mind?" can show you’re ready to listen.

This answer is a surprisingly accurate summary of how most people approach me in my pain. And while there’s nothing wrong with the intention behind these responses, they leave a lot to be desired. Let me explain.

Acknowledgment

I can’t imagine how tough it must be right now.

What I can’t imagine is what it must be like to be so darn unimaginative. We, as humans, create and destroy entire worlds in our minds every day, and you’re telling me that you can’t imagine what it’s like to get lots of migraines? Anyone who can Google chronic migraine disorder can imagine what it might be like. Saying otherwise feels alienating, like putting the conversational equivalent of a ten-foot pole between us.

Real acknowledgment makes the effort of imagining and, then, approaching. Example: Oh my God, you get multiple migraines a week? If I were in your situation, I would be so angry. Does your condition anger you a lot?

Support

I’m here for you, whatever you need.

Liar! No one can offer anyone whatever they need. This statement is yet another byproduct of a malfunctioning imagination—or, worse, laziness. Offer something specific that you are able to do, like grocery shop or go to a movie together. If you aren’t able to do anything because your life is chaotic, then say so. But don’t be so vague that you put the burden of deciding what you should do on the person who is already overwhelmed by their life circumstances. And if you really are able to do whatever, then be prepared to give me a ride to the emergency room late at night, or shop-vac all the sewage out of my basement, or remove my infected big toenail.

Validation

It’s completely okay to feel how you’re feeling.

I’ll be honest, I’m not positive what emotional validation is and at this point, I’m too afraid to ask. What is a valid feeling? More importantly, what is an invalid feeling? Because I certainly don’t want to be feeling anything invalid! Someone help me out here, I’m legitimately confused. What good does it do me to know that my feelings are predictable/normal/expected? Am I supposed to ask permission to feel the way I feel? Or are my feelings more like a parking garage pass?

Validation, sort of like acknowledgment, seems to create more interpersonal distance than it removes. It puts you in the position of observing someone’s feelings from afar instead of experiencing them up close and personal. Validation is also a heck of a non-starter. What am I supposed to say in response to your validation? Thanks? And just like that, the conversation is over.

Listening & Encouraging

Do you want to share what’s on your mind?

This idea isn’t a bad one, for the record. Listening to people who are hurting is great, and we should all do this. Gold star, ChatGPT (though you already had three strikes). But sometimes when I’m hurting, I want more than a listening ear, or acknowledgment, or support. I also want encouragement and hope. The ability to speak powerfully into the lives of the people around us is what makes us better than chatbots, after all.

So whenever I’m face-to-face with someone who is hurting, I try to not only listen but also offer some encouragement. The key to encouragement? Keep it simple, but also keep it TRUE. This will get better soon is simple, but not necessarily true (unless if you have the ability to predict the future and you know for a fact that my migraines will go away, in which case you still shouldn’t say this because I won’t believe you and I’ll just get pissed off at your apparent presumptuousness). 

Something to try instead is a version of my favorite line from my favorite movie, Finding Nemo. In it, Dory the Fish tells Marlin to just keep swimming. It’s simple, it’s not betting on any potentially false statements, and it gives a little boost to someone who is getting sucked down into this deep, dark sea of a world.

So keep going! Hang on! Don’t give up! Keep swimming! Because the other option is sinking, and I don’t want that for you, my friend. 🧠

What do you say to people who are hurting? Do you feel differently about what makes good acknowledgment, support, or validation? Leave a comment!

When my friend Joyce (my DD for the day) and I arrived at the squat gray medical office building across the street from a nail salon and a donut shop, I wondered if we were in the right place. After all, we had driven down the San Francisco peninsula and into the heart of Silicon Valley, where Teslas grow on trees. We were surrounded by the sovereign territories of Google, Apple, and Facebook. I used to work down here, when I worked in tech. My company offered both free shuttle services and a private SF Bay ferry for employees to ride to work.

We entered a waiting room that was quiet, dark, and sparsely decorated with vinyl armchairs, a pleather couch, and some magazines. Where was the tranquil fountain, the yoga studio, the bamboo decor? I didn’t even smell burning incense or freshly-brewed herbal tea. But when I was asked not for my insurance card, but for my credit card, that’s when I knew: This was the right place. Despite the marked absence of Buddha statues, I had entered the world of American alternative medicine.

This clinic, called Summit Alternative Medicine1, came highly recommended by my acupuncturist, who has for years served as my complicated illness coordinator extraordinaire. The role involves Googling new treatments and texting former patients while I'm facedown on a table, impersonating a pincushion. He’s rarely steered me wrong, but I’d been burned by places like this before, so whenever he’d suggested it, I shrugged him off. A long string of nasty migraines is what, ultimately, convinced me to take the leap of faith. 

Though I was unfamiliar with most of the treatments listed on Summit’s website, they did have one thing I wanted to try: IV Ketamine. Ketamine is a hallucinogenic sedative that's more commonly used for depression and anxiety, but some people with intractable migraines and other chronic pain, such as myself, have found it helpful. Ketamine for migraine is rarely covered by insurance plans, so it's best to try other, more affordable options first. But I go through migraine treatments like tissues, like toilet paper. So when it came to ketamine, I was, arguably, overdue.

My initial video consult with Summit was a thousand bucks, paid in full before scheduling. The doctor, who called in from a real-life yurt, recommended I come into the clinic for a day-long, all-you-can-eat buffet of treatments for migraines, with ketamine for dessert. Perhaps I would be interested in one of their multi-day treatment packages? The gold “Stress Relief” package was only $14,500, and was the “best value” compared to going a la carte. 

Back in the waiting room, I wondered where the other patients were. No one else was there, and as it turned out, I saw no other patients throughout my entire visit. I had, however, received multiple hints that I was on the poorer end of Summit’s clientele. Perhaps there was a separate entrance near a secret helipad for the pro athletes, musicians, and other celebrities flying in from mega yachts and movie sets—an entrance that bypassed people wearing Costco flannel shirts and comfy Costco traveler pants, such as myself.

The receptionist handed me a consent form that listed treatments like limb bagging, fat grafting, and rectal ozone therapy. (ROT, I later discovered, comes highly recommended by Gwyneth Paltrow, though it's very much not recommended by gastroenterologists.) It was easy for me to laugh at such strange-sounding treatments because they reminded me of the many suggestions I’ve received over the years for curing migraines: piercing my tragus, wearing amber jewelry, taking a hot bath, getting a breast reduction, putting cabbage on my head. Hypnosis, sensory deprivation chambers, EMF-blocking hats. Hormone therapy, every form of marijuana. Snake venom.

On the other hand, I’ve entertained more of these ideas than I’d care to admit, and certainly more than I’ve had the time or energy to actually try. This is because desperation functions like rose-colored glasses—it makes everything seem worth a go. And if you come to a clinic like Summit, how extra-desperate does that make you? So as I scribbled my name at the bottom of the paper, I hoped I wouldn't go the way of Gwyneth. 

My room, called Moon Gate Two (no joke!), had a small window, a sink, and two recliner chairs. A brochure display offered many options for light reading. “Say No to Incontinence!” said one, while another listed themes of the various ketamine “journeys” on offer. The options included “I am Well,” “I am Love,” and “I am Here.” Knowing that some people have out-of-body experiences while on ketamine, the “I am Here” journey struck me as particularly ironic. 

Another pamphlet was covered in pictures of butts. I couldn’t make out any clear differences between the various butts, though some were labeled “BEFORE EMSCULPT” and others, “AFTER EMSCULPT.” 

Joyce and I set our backpacks down beside our chairs. Between us we’d packed books, snacks, journals, headphones, and a crochet kit that Joyce had started while I was in the hospital a few months earlier.

We ate our packed lunches quickly (leftovers for both of us), expecting a doctor to come in at any moment. None came. After we’d cycled through all our usual topics multiple times, someone came to take my temperature, then someone else to offer coffee.

I’d settled into my book when a nurse rolled in an IV pole, decorated with two bags of mystery fluids. 

"This one is $300," the she said while pointing to a bright yellow bag, "and the other is $150. Do you want both? Most people do both." When I asked what was in the bags, she looked confused, as if she was a Starbucks barista and I’d just asked her for a Big Mac.

“Look, there goes fifty cents—or maybe a dollar?” Joyce said as another drop of clear liquid crawled down the plastic tube plugged into my arm.

The mystery IV bags turned out to be many of the same vitamins that I took every day at home, dissolved in water. I bought them on an impulse, like you would a pack of gum or a People magazine at the grocery store, and I quickly regretted the lapse in judgment. After four years of chronic migraines, what made me think that a little extra zinc or B12 would do the trick? Never again, I told myself. I needed to get my head in the game.

About two hundred dollars had already made its way into my veins when a lean, middle-aged doctor came in, with a few nurses and a teenaged girl shuffling behind him. The nurses wore scrubs, the teenager, jeans. The doctor had carefully combed hair and the look of someone who rarely smiles. He introduced himself as Dr. Bradley.

I had heard of Dr. Bradley—or, more accurately, the Dr. Bradley. He was the founder of Summit, and widely considered the best of the best for treating mystery medical conditions. My acupuncturist told me that people flew in from all over to meet with Dr. Bradley, and that he charged—am I remembering this right?—five thousand dollars for a one-hour consult.

Dr. Bradley’s eyes expertly bypassed my face, settling instead on my California Highway 1 baseball hat, which I had placed on the counter.

"Oh, California, nice," he said in a voice as flat as a pancake. "Anyway… this is my friend's daughter, she's doing a sort of internship, mind if she watches?" He didn’t overexert himself by either looking at or gesturing toward the girl. 

“Uh, ok,” I said, sensing that this was the only acceptable answer to the question.

Then another nurse appeared, to fetch Dr. Bradley. He and his entourage exited as quickly as they’d entered, without saying a word. Joyce and I exchanged a look as they left.

Upon Dr. Bradley’s departure, I realized it had been three hours since my appointment began. My husband Cory messaged me to ask how things were going, but I wasn’t sure how to explain to him that Summit and Moon Gate Two seemed to be at the epicenter of a time-dilating vortex. What year would it be when I got out of here? Would Cory still be alive?

I’m not sure how long Dr. Bradley was away. Could it have been an hour? No, maybe more like 20 minutes. Perhaps even 10? Whenever it was that he came back in, he was alone, and he looked put out.

“What are you here for today?”

When I told him I wasn't sure what I was there for besides ketamine—I mean, was there a menu I could take a look at?—his jaw tightened into a sharp corner.

“I’m not going to give you a consult. Those are scheduled separately, and they’re an additional fee."

"I already had a consult and was told only to come in."

"Then you should have called the front desk with your questions."

I had called the front desk—three times, actually. This was not because I’m a particularly Type-A person. I actually hate making phone calls. But my interactions with Summit so far had, on the whole, failed to instill confidence. First, the administrative staff cancelled my initial video visit, claiming that I hadn’t provided all the required intake paperwork. Despite the fact that I submitted all the forms days earlier, I found myself begging for forgiveness, and quickly filling out all the information again to get my appointment back (having already taken my thousand-dollar booking fee, they really held all the cards). 

Next, they sent a bunch of urine test kits for someone named Charlie to my house, with a form containing all of Charlie’s personal information. Charlie, if you’re reading this: Please advise if I should send your pee receptacles, or if I can just keep them. After all, I’m always looking for more Tupperware, and yours happen to be the perfect size for freezing individual portions of soup.

This is why I thought it best to call ahead with my questions. Each time I had, the receptionists sounded incredulous, and they told me to save my inquiries for my appointment. 

But I didn’t tell Dr. Bradley any of this, because I didn’t want to complain, and I wanted him to like me. After all, it was just a thousand dollars, a significant patient privacy violation, and many hours spent worrying if I was a victim of an elaborate medical ruse. 

All I told him—very casually, very nonchalantly—was this: “Oh, ya, I think I did call the front desk. Just a few times, though.”

Dr. Bradley’s face became suddenly severe, like that of a crotchety old school teacher. Was I sure I had called? How many times? He looked poised to smack me across the knuckles, or to wash my mouth out with soap. He left in a rush—perhaps to find a ruler.

Joyce put down her notebook (she had found nothing from this conversation worth noting) and picked up her complimentary coffee. The coffee was in a big, white mug with Dr. Bradley's name printed on it in Comic Sans.

This was the first time I’d met a doctor who seemed to—how should I put it?—hate my guts. I’ve had doctors give me bad advice (like the one who said I was dehydrated when I was, in fact, having debilitating migraines), and I’ve had weird doctors, too (though really, who doesn’t want to sing along to Jesus Christ Superstar while bleeding from the back of the head?). I’ve even had a doctor who called in drunk to a morning video visit. But having an angry doctor (whom I’d pissed off entirely by accident, no less) was a totally new experience for me. 

I make every effort to avoid this situation by staying on the good side of my medical providers, especially when their jobs involve needles. I’m polite, I arrive on time, I make small talk, I don’t yell at them for stabbing me in the face even though it really hurts. I even send holiday cards. 

One of the things Dr. Bradley was most known for: highly specialized injections for chronic pain. So, though I understood that the Hippocratic oath is a thing, I hope you’ll pardon me for having been just a little bit nervous about Dr. Bradley. I figured I’d need to paper over this doctor-patient relationship with holiday cards for at least for a few years.

The Dr. Bradley mug was empty and I’d started back into my book (a Mary Karr memoir, in which she voluntarily checks herself into an insane asylum) by the time our next visitor arrived. 

Dr. Haywood—the same doctor who did my initial video consult from a yurt—had bronzed skin, a kind face, and the general look of someone who grows their own arugula. After sauntering into the room, he jumped up on the counter, sat beside my hat, and balanced his laptop on his knees. He occasionally ran a hand through his messy, shoulder-length hair as he detailed treatments like an eager maître d' sharing house specials. He spoke with a surfer bro voice.

“For sure your nervous system is fried,” he said, his feet dangling lazily near my shoulder, “so we’re going to do a reboot, like a defrag, right? We’re going to reboot the sympathetic nervous system. I think the computer analogy is pretty good, right?” 

This “reboot,” he explained, was to be achieved by shooting a bunch of numbing agent into my neck. Dr. Bradley would be the one doing the shooting, because his skills in this particular area were “exquisite.” My job, I imagined, would be to lie flat on a table, trying to look simultaneously apologetic and litigious as Dr. Bradley approached me with a needle, asking me through gritted teeth if I was sure I had called the front desk.

Next up on the menu: exozomes. 

“Exozomes are stem cell growth factors, right?” Dr. Haywood said, as if this explained anything whatsoever. Their job was to go up into the brain and “make things better.” That’s what a lot of the pro athletes came in for, exozomes. 

Joyce had started taking notes. 

Then the nerve bath, said Dr. Haywood. We’d bathe my nerves in a regenerative solution called placental matrix (“the best nerve juice around”). Or we could use peptides, which are cheaper but still “really powerful” (and commonly used for their skin-whitening properties, according to Google).

And don’t forget about ketamine! Though by that point, I nearly had. 

Dr. Haywood proposed starting with an ultrasound diagnostic, to look for nerve impingements or swelling. (“You just lie facedown and we put ultrasound jelly on your neck, right?”) Then we could decide about the reboot, the exozomes, and the nerve juice before moving on to the ketamine.

"Was that a good cop, bad cop act?" Joyce asked after Dr. Haywood left to make arrangements for the ultrasound.

The ultrasound diagnostic was performed by a third doctor, Dr. Davis, in a room down the hall from my Moon Gate Two. A bluetooth speaker blasted a James Bond theme song as I sat down on the exam table. Joyce, meanwhile, settled into a chair with a life-sized skeleton standing beside it. The skeleton was turned around and hunched over in such a way that if it had had an actual butt, even an EMSCULPT-ed butt, it would have looked quite offensive.

Dr. Davis was overflowing with the confident, secure disposition of a wildly successful white male. He had broad shoulders and a manicured smile—the type of smile you'd expect to see on a billboard for a car dealership or personal injury law firm, emblazoned with a catchy slogan and memorable phone number.

"Is this your mom?" Dr. Davis asked, nodding toward Joyce.

I looked over at Joyce, confused. I was confused because Joyce not only looks younger than me, but is also Asian. I am not.

Dr. Davis performed the ultrasounds to the dulcet tones of "Crazy Train." This nerve is swollen, he said. So is this one, clearly. C1, C3, C4, C5, L1, L2, T11, T12. All tender, all enlarged. He showed me some of my nerves on the ultrasound screen. None of the tiny gray lines looked swollen to me, but this was my first time looking at nerves. 

“I’ve seen forty, maybe fifty thousand patients with headaches,” Dr. Davis said as he pressed the probe into my neck, “and I’ve cured them all. Except for one, my nephew. But his headaches went away after I told him to lift weights.”

My calculations indicate that Dr. Davis was claiming to have healed 6.4 people every day on average for thirty years, not counting weekends. This would rank Dr. Davis above Jesus Christ, strictly speaking, but Jesus didn’t live much past age thirty, and there are no recorded instances of Jesus healing headaches. Are headaches harder or easier to heal, from a miracle-working perspective? Perhaps Dr. Davis vs. Jesus is too much of an apples-to-oranges comparison. 

Dr. Davis pressed on my diaphragm and told me to take a deep breath. And another. And another. 

“Hm, the left half is paralyzed. Have you ever noticed that? I’ve seen this problem a million times. It causes heartburn.”

“But I don't get heartburn."

"You do, you just don't realize it."

Joyce had started looking up the songs playing over the speakers. This one was something by Black Sabbath.

“Are you ready to not be disabled?” Dr. Davis asked after finishing the exam. “Because I can cure you right now!”

Dear reader, I wish could tell you that I laughed in his face, or marched right out of the room, or flipped him the bird. That would have been the logical thing to do, given that I know that chronic migraine disorder is an incurable neurological disease with many complicated causes. (Some people can achieve significant improvements in their migraine disease, to the point that they can drop the “chronic.” But such successes are both rare and hard-won, and these people can still get migraines.)

For the first year of my illness, I searched desperately for the quick fix, for the one treatment that would reverse my brain’s complete and utter betrayal. I tried what I thought was every treatment, every drug, every diet. Some things helped, but nothing brought my old life back to me. Eventually, I realized that nothing money could buy ever would. So I learned—slowly, and with much anger and sadness—to let go of what I had lost, pick myself up again, and keep on living.

Or at least, this is what I thought I’d learned, until Dr. Davis said he could cure me. 

Because what if he was right? What if I could and throw out all of the prescription drugs, all of the pain-relieving ointments and oils, all of the neck massagers and pillows and sunglasses bought on a whim? What if Cory and I could travel again? What if we could backpack around Europe, or see Asia for the first time? This is what other young, childless people do. Maybe after traveling the world, we’d decide to stop being childless. 

Dr. Davis proposed injecting various nerves with the nerve juice that Dr. Haywood had described to me earlier. When I asked him to explain exactly what he would do, he took out his phone and opened an anatomy app.

"See, that's a nerve," he said, zooming in on a thin yellow line. "Is that C5 or C6? I can't tell." 

He tapped the screen, pinched, panned, opened each menu, but found no labels. 

"Oh, well, it doesn't matter."

He dragged his finger to another nerve, then a muscle in the neck, then a vertebra, then back to a nerve—was it the same nerve? And there was the diaphragm. 

Tap, tap, zoom. 

“This is connected to that, see? Oh well you can't see it right now, but imagine if this wasn't there. Let me see if I can highlight it. No, I can't. But you get the idea.”

Dr. Davis put away his phone, then left to find Dr. Bradley. I sat down next to Joyce and wiped the ultrasound goop out of my hair with a wad of Kleenex. The rock music kept on blaring.

The spell was broken when Dr. Davis left the room, and I slowly floated back down to earth. I still wanted him to be right, because I wanted to be cured, but on the other hand, I also wanted him to be wrong, because I didn’t want to further inflate his ego. When told the price of this miracle cure ($15,000 minimum), I finally touched the ground. That’s also when I realized that Dr. Davis, like any good car salesman, had failed to offer a money-back satisfaction guarantee.

We were back in Moon Gate Two and it was, somehow, five pm.  I was having an impromptu (and hopefully, complimentary) consult with all three of the doctors I’d met that day, though only two of them were present. Dr. Haywood and Dr. Davis took turns leaving the room to consult with the disgruntled Dr. Bradley about the plan, but they did not bring him into the room. 

Was Dr. Bradley really still mad at me? Though I found this hard to believe, he later admitted he was so “triggered” by my alleged attempts to call the office with questions, he had spent the afternoon interrogating each of the receptionists about my claim. (They all denied it under duress, leaving me both bewildered and, I gathered, in a lot of trouble.)

After some deliberation and secret exchanges with Dr. Bradley, Dr. Haywood concluded: “If it weren't already so late in the day, you'd have time to try multiple things, right? But we’re like closing soon, so you should stick with just the ketamine.” He said this as if this wasn’t at all the original plan.

As a nurse laid me down on a massage table in a room decorated with Himalayan salt lamps, a yin-yang flag, and a Hindu elephant god statue (finally, the vibe I had expected), she started playing a new-age soundscape from her phone. Then, she pushed a syringe of clear liquid into the bag of saline on my IV pole. 

The drug started to drip, drip, drip—how many bucks per drop? Three or four, I figured. This had better work!

Drip, drip, drip.

As I waited to feel something, I thought of Dr. Haywood, Dr. Davis, and Dr. Bradley… 

Drip, drip, drip.

Exozomes, the skeleton, and rectal ozone therapy… 

Drip, drip, drip.

Crazy Train started playing in my head.

Drip, drip, drip.

Come to think of it, could I have been on ketamine this whole time? Maybe I’d gotten it first thing, right when I walked into Summit. Perhaps this entire day had been one long trip.

Drip, drip, drip.

It was half past seven when Joyce and I finally packed up our things and left Moon Gate Two for good. But that did not end my first day at Summit Alternative Medicine. 

No, my first day at Summit Alternative Medicine ended with us standing outside the squat, gray building, staring helplessly through a metal gate at Joyce’s parked car. The garage had, apparently, closed an hour earlier, the front door to the building had locked behind us when we left, and nobody was answering the phone. 🧠

Guinness doesn’t keep records on this, but if they did, I’d definitely be in the running for the largest number of second opinions sought for the same medical condition. After all, some people claim to have achieved remission from chronic migraine disorder—the illness I have. You can’t win if you don’t play, so I have “played”—aka sought a second opinion on why I’m in pain so often—no fewer than fifteen times. (I’ve long since lost count of the non-professional opinions I’ve received, but it’s at least a few hundred.) 

Most of the doctors I’ve talked with for a second opinion have said the same thing: you have chronic migraines because you have migraines, chronically. It is, I think, illegal for a doctor to come out and say “I don’t know.” A few of the doctors have had new theories, however. For example, a doctor in Marin once told me that my patchy eyebrows indicated I have thyroiditis, despite my thyroid tests coming back normal multiple times over. What she didn’t realize is that I’ve never been taught how to properly pluck my eyebrows, so whenever they start scaling my forehead like mountain goats, I pluck and pluck and pluck until they’re a mere shadow of what they once were.

My most recent second opinion, opinion number fifteen, was this past spring. This second opinion was also my first unquestionable act of medical tourism, as the clinic was in New York City. (Medical tourism, for those who are blissfully unaware, is when you travel long distances to receive better and/or cheaper medical care.) 

The founder of this clinic was on a panel at the Migraine World Summit and I found her—dare I say it?—inspiring. Dr. Inspiring talked about things like nutritional and natural remedies for chronic migraine while the other panelist was a proponent of forcing migraines into submission with obscene amounts of Botox (aka a neurotoxin). According to Dr. Inspiring’s website, she was a well-regarded headache specialist who left her job at a much bigger neurology practice in New York in order to open this integrative migraine treatment facility. 

The idea of a western-trained doctor broadening their horizons appealed to me. The long trip to New York did not, but Dr. Inspiring’s clinic in Manhattan wasn’t licensed for virtual visits in California. It seemed like a long way to go for a single appointment, which according to the clinic’s website, would be one hour long. They also didn’t take insurance, any insurance, because, oddly, any clinic that’s worth their snuff in America isn’t going to waste time dealing with insurance companies.

But if I never went, I knew I’d always wonder if I was one trip to New York away from remission. So I decided to eat the exceptionally high out-of-pocket cost along with the cost of plane tickets, saying this would be my last second opinion for a long while. I’d go to New York and I’d maybe, just maybe, have fewer migraines because of it. Maybe I’d get a vacation out of it, too.

When I called Dr. Inspiring’s office to book an appointment, the inspired feeling began to fade.

“I’d like to book a new patient appointment,” I told the receptionist.

“Sure, what insurance do you have?” she replied. This seemed to me a strange question, given the fact they didn’t take insurance.

“I have Medicare.” Medicare is federally-funded health insurance, which I only qualify for because I’m disabled. Disabled implying, perhaps, my greater need for medical treatment than most other people? But perhaps not.

“I see. We do not allow people with Medicare to see Dr. Inspiring. You’ll need to see our other doctor. But don’t worry, she’s just as good.”

“But I’m not using insurance to pay for the appointment…” Specifically, I knew I couldn’t use insurance to pay for the appointment, otherwise I would have.

“Doesn’t matter.”

“But I’m coming to this clinic from San Francisco, can’t I see Dr. Inspiring?”

“First of all, we are NOT a clinic,” the receptionist sneered, “we are a private practice. And second of all, it doesn’t matter how far you’re traveling.”

If I had just lied and told the receptionist I didn’t have insurance, would I have gotten to see Dr. Inspiring? I considered cancelling my appointment, waiting a few weeks, then calling back to schedule again without mentioning Medicare. Maybe the receptionist would have forgotten my name by that point. Or maybe I could change my name temporarily? Would faking a British accent help?

At this point, I probably should have given up on this private practice, but I told myself not to judge a doctor by their administrative red tape. I also told myself that refusing to let someone pay full price to see a doctor just because they had Medicare couldn’t possibly be illegal. What did I have to prove by giving up now, anyway? Given the recent conference publicity, this place probably wasn’t strapped for cash. And what if they had some new insight into my condition that made all of this trouble worthwhile? The only person who I risked disappointing by walking away was myself.

A few months later, when I walked into the New York private practice, I came face-to-face with the receptionist. It was definitely her, the voice sounded the same. She was middle-aged with dark hair, olive skin, and a no-nonsense affect. Did she remember our interaction from months ago, or was I just one of a hundred people she’d disappointed on that day? 

“You still have Medicare, correct?” she asked as she handed me some forms, then sat us down on a leather couch facing her desk. Wow, way to rub it in my face, receptionist. But there was no point in lying now, five minutes before my appointment was to begin.

On the high-end coffee table between us was a bamboo tray of “migraine-friendly” snacks. They were oat cakes, individually wrapped. The packaging claimed that the oat cakes were free of all known migraine triggers and likewise gluten- and dairy-free. Having just hauled my special bed pillow and foam pad 2,500 miles to get here, not to mention the miserable jet lag that made me extra migrainey, I felt no shame in stuffing a few of the free oat cakes into my backpack as the receptionist pretended not to watch my every move. Meanwhile, my husband Cory organized his notes for our meeting with the “just as good” doctor.

“I want you to know that I read through all the records you sent over this morning,” said Dr. Justasgood at the beginning of the one-hour appointment, after wasting something like 45 valuable seconds on talking about the weather. It seemed unlikely she’d read all the records I’d sent, given that I’d included some six hundred pages of my medical history. That’s a lot of reading for one morning. But I didn’t question Dr. J. After all, Cory can inhale a book about the failed Whig politics in the election of 1844 faster than most people drink a coffee. 

Despite her having “just read” my entire medical history, Dr. Justasgood requested that I summarize my medical records. I’ve got the shtick basically memorized by now: my first migraine was in August of 2019, it lasted ten months, I’ve tried medications A, B, C, D, E, F, G, H, I, J, K, L, M, N, O, P, Q, R, S, T, U, V, W, X, Y, and Z (“A” is for Almotriptan, “B” is for Botox…“Z” is for Zolmatriptan). Yes, I get all the recommended infusions, both inpatient and outpatient. Yes, I’ve tried ketamine. Cory filled in the cracks, as he usually does, with suitably dramatic recollections of my worst migraines. Aware of the fact that I was paying roughly $15 for every minute of this appointment, I tried to gloss over as many of the details as I could, but Dr. J kept stopping me to ask questions about the order of certain events, or the dates. She wasn’t satisfied until I’d spent a full forty-five minutes talking. Forty-five minutes and forty-five seconds down, fourteen minutes and fifteen seconds to go.

Now, said Dr. Justasgood, it was time for the neurological exam. A neurological exam, for those unfamiliar, is similar to the Macarena. It usually starts with touching your nose, then the doctor’s finger, then your nose, and back and forth like that for a while. Then you close your eyes while holding your arms out in front of you “like you’re holding a pizza box” (every doctor I’ve met describes this move in the way, despite the fact that many migraine sufferers, including myself, can’t eat many pizza ingredients), then you tap one foot, then the other. You tap your index fingers to your thumbs. Sometimes, you stick out your tongue, or squeeze your eyes closed, or kick your legs. Then you turn up the music! It’s all great fun, until the doctor pulls a bright light out of their pocket to burn holes through your eyes straight through to your brain.

(What’s the point of this dance routine, you ask? There isn’t one. Migraines don’t ever show up on neurological exams. Of the eighty-seven neurological exams I’ve done in my lifetime, I’ve passed eighty-seven of them with flying colors.)

What Dr. J did after the neurological exam that NO doctor had ever done before was…actually touch my head. “Wow, it’s tight,” she said. “You should get a massage before traveling back home.”

“I just got one,” I replied, “two hours ago.”

“Huh,” she said.

Dr. Justasgood’s neurological and physical exam took about ten minutes combined, leaving her with four minutes and fifteen seconds to give me what I came for: answers. This is when I expected an “integrative” clinic like this one to really shine by whipping out theories I hadn’t heard of before about what is wrong with me, like the eyebrow thing but more correct. At the very least, I expected her to mention mold poisoning, heavy metal toxicity, and leaky gut, as these three problems are the scapegoat for many a medical malady. I just hoped she would mention these things quickly, or perhaps extend the appointment, so that we could have more time to discuss her findings.

“Well, if you ask me,” Dr. J started out, adjusting her white coat as she turned to face me in her office chair, “you definitely have migraines.” 

A single snort of laughter escaped Cory’s nose. I twitched in my chair like a dilapidated city pigeon.

Dr. J managed to end the appointment with two minutes to spare.

Dr. Justasgood’s diagnosis was the most expensive I’ve ever received. But I’d wanted a second opinion, and that’s exactly what I got. Never mind that I was hoping for a second opinion on the cause of my migraines, not the fact of my migraines. Her primary treatment recommendation was a pain killer, a cousin of Ibuprofen, and her only other recommendation was also a pharmaceutical. (I tried both medications for a while, but noticed no huge difference.)

The moment we left the office, I was feeling pretty low. I had just stumped what I thought was one of the best private practices in the country. Where could I go from here? I’d been so anxious and sick before the appointment, I hadn’t wanted to explore New York City too much. But now, I wanted to explore even less. So we went straight back to our hotel, and Cory ordered takeout while I iced my head. As I waited for dinner, I took the oat cakes out of my bag, intending to soften the blow with a “migraine-friendly” snack. This is when I discovered that the oat cakes contained coconut, a common migraine trigger that I avoided. 

Cory, always one to help, offered to eat them for me. 🧠

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Of the many struggles with chronic illness, unsolicited medical advice is one of the most universal. I hear my fellow sickies complain about it all of the time, and for good reason—it is really, really annoying to bulldozed by a barrage of potential solutions to a medical problem you’re already spending most of your life trying to solve. Especially when I’m agonizing over big health-related decisions, medical advice is overwhelming to the point of being anxiety-inducing.

Having said that, in my experience, about 1 in every 100 pieces of unsolicited advice I’ve received about my chronic migraine disorder has been helpful. Sometimes, I even benefit from advice given by friends who don’t have migraines. As for the ninety-nine pieces of relatively useless advice, most of those are at least good for a laugh! This is why I’m fairly tolerant of unrequested suggestions. After all, I’m always in need of material.

Also, whenever someone asks me if I’ve tried ice or peppermint oil or Magnesium or health coaching for the millioneth time, I try to remember that although most people haven’t been through the exact same situation as I’m going through, we’re all going through life. And life is a big mean bully to a lot of us, even though our bruises may look different. What I’m trying to say is that lots of people know a good deal about pain, even if they don’t know much about migraines. So I try to view every offer of advice as someone’s attempt to make my life a little better. Except for all the people who say I shouldn’t eat dairy, because those people are just plain evil.

Though if I could offer you a piece of advice: If you don’t know a person well enough to know how they’ll react to your unsolicited advice, put that cart right back behind the horse. Get to know them better first! 🧠

During my first two years with a severe chronic pain condition, I refused to call myself “disabled.” This seems odd in hindsight, as I readily self-identified as many other things: woman, Christian, San Franciscan, dog parent, lazy dresser, belligerent board game player, passionate waster of Kleenex. But when it came to the term “disabled,” I thought I wasn’t allowed to assign this label to myself, kind of like how you’re not allowed to give yourself a promotion at work, or you’re not allowed to call yourself a funny person (even when everyone laughs at your jokes and the only reason you’re NOT getting into standup is because you’re too photosensitive to tolerate stage lighting). I also was, practically, in too much pain to think deeply about my identity and if I should be making any changes to it now that my life had been turned upside-down.

I left the task of determining whether or not I was disabled to my many neurologists, because they’re doctors, isn’t this part of their job? Answer: No, it’s not. Neurologists prescribed drugs, performed neurological exams, and typed out inaccurate notes about my situation, but they would not, under any circumstances, wade into the murky waters of defining disability for something as slippery as migraines. The neurologists left this to my employer’s disability insurance company because, well, they weren’t called a disability insurance company for nothing, were they?

A year after I left full-time work, my disability insurance company case manager, who I’ll call Olga, called to tell me that I wouldn’t get any more disability payments. She’d asked a bunch of “neurologists” what they thought of my case, and these super-smart doctors agreed that Migraine wasn’t a disabling condition. (Are neurologists who work for an insurance company really neurologists? Asking for a friend.) 

“Be that as it may, Olga,” I replied in a tone that was half confident, half condescending, “Migraine disease is actually one of the leading causes of disability globally. As for me, I’m currently medicated within an inch of my sanity and still in pain 24 hours a day. Do you know what constant pain does to the nervous system, Olga? It over-activates the amygdala, resulting in a chain reaction across the parasympathetic nervous system which…”

Actually, I didn’t say any of that. I just said ok, then hung up the phone and cried into my Dory the Fish stuffie. (Dory said I should just keep swimming, but I told her to shut up.) I certainly felt disabled, as I couldn’t even remember the last time I’d been able to make it through a day without needing a nap, and I’d given up on socializing, traveling, and leaving the house long before it was cool. But I was told that I wasn’t disabled, so that was that. Because I was still unable to do my job, I quit of my own accord the following month.

My disbelief in my disability only grew from there. It’s not that I didn’t believe I was in pain every day or struggling with frequent light sensitivity, nausea, and dizziness. The disability shoe did seem to fit, but I also knew I wasn’t as bad off as some other people with “real” disabilities. How could I be disabled when I could still walk, talk, and even ride a bike for a short distance, assuming the sun was neither too bright nor too high nor too low, and even still I’d get a migraine afterwards? I feared calling myself disabled only to have an angry mob of much more disabled people (who were likewise still capable of walking, and who in my mind all look a bit like Popeye the Sailor) chase after me with pitchforks in hand, ready to impale me for being a fraud.

As a child of two hard working blue-collar parents, I also grew up believing that the government gave too many handouts to lazy people. The disability system seemed unfair—why would we force people who worked hard for a paycheck to give some of it to people who didn’t work?! So when I suddenly became one of those people who didn’t work, I didn’t know what to think of myself, nor did other people know what to think of me. One relative, shortly after I started getting chronic migraines, asked me how I was enjoying my retirement. He was joking, I hope, but it only reinforced what I already thought to be true: I was being lazy, and not working because I secretly enjoyed sitting around on the couch all day.

People have enough difficulty talking about disability, but they have an even harder time talking about disability-in-denial. Because of my disability imposter syndrome, I endured the following conversation countless times:

Some Person: “Hi, I’m Some Person, what’s your name?”

Me: “I’m Natalie, nice to meet you.”

Some Person: “Likewise! What do you do Natalie?” 

Me: “Err…I get migraines?”

Some Person: “Like, that is your job?”

Me: “Ya, I guess so.”

At this point, the Some Person would always grow very interested in a dog humping an Amazon box across the street, or a text message from their grandma. (Chris Stanton rightly pointed out how frivolous and frustrating questions about work can be in one of his recent posts.)

I know that people hire lawyers all the time, like to get paid for spilling coffee on themselves, or to express frustration over the discovery that boneless chicken wings are not, in fact, chicken wings. And yet, I’d never considered hiring one. The idea of it felt wrong, as if this action was reserved for either criminals or confrontational jerks. After all, calling someone “litigious” is not a compliment. But when a friend of a friend who also had chronic migraines gave me the number of a disability lawyer, for some reason, I called her, resolving to never tell anyone that I did.

“You’re disabled,” the lawyer told me. Her validation of my situation made her seem, suddenly, worth her weight in gold. This means she was worth roughly $3 million, give or take a few hundred thousand, depending on her exact weight. I only hoped she would charge me less what she was worth, when all was said and done.

The lawyer prepared to sue the butt off of the disability insurance company for discontinuing my payments. Even though I’d left my job, because it was due to my illness, she said I was eligible for the money. The litigation involved, among other things, drowning Olga in some FOUR HUNDRED pages of interviews, case studies, headache logs, and “vocational expert” evaluations, all of which proved that I was disabled by chronic migraines. I grew exhausted just reading the appeal, and apparently, so did the insurance company. 

“Great news!” my lawyer said in an email about six months later, announcing that the appeal was successful. I was officially sick enough to get paid for it. What a funny thing to celebrate, I thought. And yet, it did feel like great news. If I was going to be in so much pain, I might as well have some money to offset my mountain of medical expenses. It was obviously nice for my lawyer, too, who did NOT charge her weight in gold but still charged a lot. It was also nice for the IRS.

Like most headache medications, this whole process had an unintended side effect. Unlike most headache medications, that side effect was not a headache. My lawyer’s appeal detailed how limited my life had become since getting migraines, and how much I struggled day-to-day to survive. The packet included interviews my lawyer had performed of my closest friends–all of whom I’d been ashamed to tell about hiring a lawyer.

“She can be utterly incapacitated,” said one friend.

“Her health completely knocked her out…her disability has been long-term and destructive,” said another.

In reading their words, I finally saw what my friends saw: I wasn’t exaggerating. I was disabled. 

The disability shoe had fit for a while, but for the first time, years after my chronic migraine disorder began, I finally decided to wear it. (Note that calling myself “disabled” is not the same as calling myself “differently-abled.” I talked more about this here.) This made conversations with strangers immediately way less awkward (for me, at least). And, much to my relief, no Popeyes came chasing after me with disability-imposter pitchforks. 

In fact, the disabled people I’ve met since “coming out” as disabled myself have all been friendly, encouraging, and deeply understanding of what I’m going through. I also find that hearing from other disabled people about their experiences, now that I’m one of them, gives me a special kind of strength. It’s a strength that comes from feeling the victories, losses, and stories of others as deeply as I feel my own. It’s a strength that comes from not being alone, even when I’m by myself in a dark room for extended periods of time.

Olga recently came after me with more paperwork to prove that I remain disabled. Wish me luck and no need for a lawyer! 🧠

This story is in honor of Disability Awareness Month (which is, for unknown reasons, not the same month as Disability Pride Month). Believe it or not, I’ve had an easy time getting financial support compared to most people with invisible and/or variable disabilities. With over 40 million Americans experiencing invisible disabilities, validating and supporting these and all disabled people is more important than ever. Thanks so much for reading, and for doing what you can to support those in your life with disabilities.

Thanks to Kat Foley for helping me edit this post.

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