That’s the word I tried, in vain, to think of for upwards of four minutes. Four minutes may not seem like very long, but when you’re a writer by trade who literally majored in English literature, there’s just about nothing scarier than having your brain take plural moments to conjure up a simple word like “troubleshoot.”
That’s when I knew I was in trouble.
I was reminded of this unnamed trouble every time I told my sister the same story three separate times, not remembering I had already told her. I was reminded when I would wake up in the morning and stretch my legs, only to have them thrash into muscle spasms I couldn't explain. I was reminded every time I would get home from work only to immediately crawl into bed because I truly could not stay awake or stay standing for too long without feeling faint and off-balance.
It had all started with a fainting spell, and then another, and then another. I'm used to being sick –– nearly a decade with Crohn's disease has made sure of that. But this was new, and none of these symptoms made sense. I felt like I was losing my grip on reality every time I forgot to send an email that my "old" self never would've forgotten, or when I couldn't remember the name of a friend's significant other.
Doctors were a mixed bag of helpfulness. My gastroenterologist recognized how troubling my symptoms were and referred me to a cardiologist. The cardiologist told me I may just be "stressed," and that I should drink more water. I deteriorated. I couldn't have conversations with my mom because she would inevitably ask me a simple question, my brain would fail to figure out the answer, and in the frustration with being betrayed by my own mind, I would snap at those closest to me. I was becoming irritable, and physically weak, and I often wavered off path when I walked to work because my balance was so poor.
I knew something bad was happening to me –– but what? The cardiologist certainly seemed to think I was just suffering from the catch-all affliction of being a neurotic young woman. Was I simply going crazy? I didn't feel stressed, but was I wrong? Was my brain trying to tell me something with blackouts and memory loss that I couldn't cope with on a surface level?
“I felt myself melting into the shadows like the negative of a person I'd never seen before in my life.”
On a particularly bad day, I was having trouble staying awake through anything. My body was screaming, "lay down!!!" and my extremities were tingling as though they, too, were ready to call it quits. My GI was nice enough to get me into her office on an emergency basis, and she referred me to a neurologist and advocated for me to get a brain MRI and EEG as soon as humanly possible.
I got lucky. A few foggy days later, the neurologist believed me when I said that a 26-year-old shouldn't faint every time she goes outside or have to piece together the last hours of her night, every morning, by looking through texts she doesn't remember sending.
He didn't know what was wrong, but we had options to test for, and he assured me that we would figure something out.
"Have you had your B12 levels tested?" he asked, as almost an afterthought.
I thought it was a strange question. I'd had low B12 levels when I'd first been diagnosed with Crohn's, years ago, but I'd taken some supplements for a while and then no one had ever mentioned it again. And regardless, I was convinced the sinister neurological symptoms I was having couldn't possibly be due to a simple vitamin deficiency.
As it turns out, the simple answer was the correct one. After weeks of living in an irritable, fragile fog, we had a reason for what was happening to me. I had a severe Vitamin B12 deficiency, likely due to the fact that B12 is absorbed in your ileum, the part of the small intestine that my Crohn's inflammation has largely ravaged. I wasn't absorbing the vitamin at all, a dangerous but little-talked-about problem that happens to many IBD patients.
What was a fairly common off-shoot of Crohn's Disease, as it turns out, was responsible for all of my terrifying, extra-intestinal symptoms. According to a Harvard study, a severe B12 deficiency can lead to deep depression, delusions, memory loss, and more. If left untreated, it can lead to severe and lasting neurological problems, as well as blood diseases.
All of this has served as a lesson to myself in self-advocacy. My symptoms were brushed off multiple times in the beginning, because things like fatigue and weakness are hard to quantify. If I had given up, or given in to the idea that I was just going through something psychological, I could have gotten even sicker. My body's lack of B12 could have done permanent damage. Only in pushing to see different doctors and get different opinions was I finally able to get the golden ticket that is a diagnosis, and therefore, treatment.
I'm now on a regular schedule of B12 injections, the only way my body can absorb the incredibly necessary vitamin. I'm still building my levels back up, so I'm not entirely "back to normal," but I'm getting there. Sometimes I can stay up until 11 PM without a nap, which feels like progress. My brain MRI and EEG came back normal, and I'm told because we caught the deficiency quickly, that no permanent damage has been done. We've ruled out the big scary things that B12 deficiencies mimic the symptoms of, like Multiple Sclerosis and Alzheimer's.
As a kid I played a few sports, but athleticism was never where I thrived. I was good at reading, and writing, and formulating a compelling argument. I was good at understanding things. I wrote stories, and op-eds, and scripts, and stand-up comedy, and I did all of that with the secret weapon that was my quick-firing brain. My body has been failing on me from an early age, I'm used to that –– but nothing could've prepared me for the intense fear and anxiety that accompanied the feeling of losing my mind.
While athletes face a reckoning with meaning when they get a season-ending injury, my reality check came in the form of a medical problem that threatened to change who I am on a neurological level. And as someone who holds personal narrative as the closest thing to a religion, the idea of losing governance over my own thoughts and feelings was a shock that has left me reeling ever since.
What are we, after all, without a brain that does the work it implicitly promises to do? Without the memories of our best and worst moments, without the ability to conjure up a devastating punchline, without the cognitive ability to keep knowing the things we've learned?
As it turns out, all of us have a much more tenuous grip on reality, and on our own consciousness, than we'd like to admit. Like a broken bone or a heart attack, we're all just lucky to be avoiding a neurological upheaval of some kind or another. Pay attention to your body. Pay attention to your mind. And when you need to, make the doctors pay attention, too.