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
I had hep C for 20 years and then seemingly overnight they invented a cure. I understand how you get married to being a “sick person”. But it all makes us who we are ❤️
Love it love it love it! Thank You, Jesus!!!!