Names in this piece have been changed.

The only reason I’m alive today is because of the diligence of my mother and the willingness of a YouTube vlogger to share her life with the world.

It was late 2013 and just about four years since I had started taking Keppra, an anticonvulsant, to keep my seizures in check. Only it wasn’t working. After not having any seizures since I was six, they came back with a vengeance, seemingly out of nowhere, when I was seventeen. That’s one of the things that makes my epilepsy peculiar: while it has been latent most of my life—a low-grade buzzing in the background—when it comes back, it comes back hard. As a teenager, this kept me from driving, from having a job and, let’s be honest, nobody wants to date the girl who’s convulsing on the floor. But Keppra was supposed to change that.

“It’s fairly new, but very safe,” my neurologist said of Keppra the day I appeared at his office out of the blue, after having my first seizure in eleven years. I was sitting on the exam table, my cognition fucked and my pulse furiously pounding behind my eyes. “There are very few side effects,” he said, writing out the prescription.

“Yeah, okay. Sounds good,” I said. At that moment, I would have agreed to just about anything to get out of there and into my bed, and wasn’t interested in hearing the same unnecessary spiel he gave every time he switched my meds. I trusted him and would never have questioned his judgment—he had been the neurology fellow working at the hospital the day I had my first seizure at four years old. He diagnosed my epilepsy the next day and permanently took on my case. We grew close over the nearly two decades I was in his care, through multiple seizures, medication switches, and neurological tests. At some point, the line of a professional doctor-patient relationship became impossibly blurred. He cared too much, was too invested. But he was not the only one. I thought of him as some magical, godlike being who kept the big, bad seizures away, when he was only a middleman. He wrote prescriptions for little pills that, in a perfect world, did the heavy lifting. And there had been a lot of lifting to do.

I had taken many of the heavy hitters in the past—Tegretol, Topamax, Trileptal, Phenobarbital—and had never experienced any major side effects. After having medication become such a mundane part of my life, it never occurred to me that side effects were something I could experience. Having never been educated on the prevalence of medication side effects, nor how they manifested—I solely envisioned them in the form of full-body rashes and swollen eyelids, not psychoses and insomnia—I had no idea what to look for. So, when it all came on, the depression, anxiety, and OCD creeping up slowly, and then the paranoia, uncontrollable mood swings, and relentless insomnia taking me out like a punch to the throat, I just attributed it to stress and fatigue from outside forces in my life, the world’s worst case of senioritis.

The worst side effect, unquestionably—mostly because, aside from the OCD, it is the only side effect that remains five years after discontinuing the medication and is the only one that impairs my life on a daily basis—is the cognitive impairment. Before Keppra, I was quick and eloquent when telling stories, the words flowing out of my mouth like a waterfall. Now, my recall is stifled, the words slowly crawling out like water dripping from a leaky faucet.

Eventually, I went to a therapist of my own volition, hoping she could help me figure out why I felt different.

“I honestly just think you’re a bit depressed from starting college,” she said at the end of our intake session. “It’s a big transition and you need time to get used to it. This happens to lots of people.”

She was right, this was a common phenomenon. So common that they brought someone to talk to us about how to deal with depression at my honors college orientation. I felt better, until she handed me a little yellow sticky note.

“These are your diagnoses.”

It looked like a grocery list: clinical depression, obsessive compulsive disorder, insomnia, panic disorder, attention deficit hyperactivity disorder, paranoia. This, I would later come to find out, is not an actual diagnosis, but a symptom of a much larger issue, most likely something called antiepileptic (AED) drug-induced psychotic disorder (AIPD), wherein the patient suffers from psychosis while taking a seizure medication. It’s more common in Keppra than any other AED, and I fit the description nearly perfectly.

“I’d still like to see you once a week,” my therapist said, “but I think we should go ahead and try some medication, to see if that helps.”

I had never been on antidepressants, wasn’t that kind of person, I thought. But I went along with it. If the doctor thought I needed them, I must. I was, after all, exhibiting more odd behaviors, and with each passing month I lost another friend, quit another job, withdrew from another class and, eventually, reality altogether.

A week later, I was sitting in a psychiatrist’s office that was the size of a closet. The doctor, a middle-aged man whose face I have long forgotten, briefly looked over my medical records and wrote me a prescription for Vistaril, a powerful antihistamine sometimes used as a sedative prior to general anesthesia, for my insomnia. I found him to be too indifferent toward my care, so I switched to another psychiatrist.

After yet another hour-long intake appointment, my psychiatric record was starting to thicken, and this new psychiatrist decided to keep me on Vistaril, but added Prozac to help with the OCD, depression, and anxiety, and Buspar, a mood stabilizer to prevent adverse effects from the Prozac.

Still, I asked no questions. I did no research, because it never occurred to me that my doctors could sit idly by and let something bad happen to me. It never occurred to me that they could be the ones inflicting the harm. Over four years of erratic behavior, no red flags ever went up with my doctors. To them, it was like a switch flipped on while I was sleeping, activating these tendencies and personality traits, which they believed had been inside of me all along. This eighteen-year-old girl who, aside from the seizures, was perfectly healthy and had never had a mental health issue, save for the occasional teenage mood swing, was suddenly like a scene out of The Exorcist. To me, it was like looking in the mirror and recognizing the body standing there but having absolutely no idea who the person staring back at me was.

The guilt and shame that come with being diagnosed with a mental illness are unparalleled. The doctors who are supposed to be there to help you instead slap a label on and throw medication at you, and make you feel like a leper while using their false empathy and judgmental note taking to attempt to untangle your neuroses. I never felt like they were there to help me. As many times as these doctors saw me, I never felt seen.

“You don’t have any major issues,” my psychiatrist said one day, stabbing a piece of rank broccoli with a plastic fork. “I think we should start doing your appointments by phone.”

Once a month she would call and ask if I was suicidal. I would lie, because if I admitted I had thought about eating a bottle of Tylenol for breakfast, by law, she was required to call the police. She’d tell me I sounded good, better, even, and send my refill off to the pharmacy.

One day in late 2013, my mother was watching a YouTube video from a daily vlogger named Karen, whose husband, Eric, was also epileptic, and was, on this particular day, going to get his medication switched. He had been acting differently, Karen said. Eric was aggressive and moody. His personality, she said, had appeared to change out of the blue. My mother sent a message asking which medication Eric was taking. Karen’s response was simply one word:

“Keppra.”

In an instant, it all came together for my mother, and we were at my neurologist’s office the next day. She had spent all night scouring epilepsy message boards, reading about what other sufferers had dubbed Kepprage, and presented her evidence.

That’s when he said it.

“Emily, this is you. You have a mood disorder. This has nothing to do with the medication. This is just how you are.”

He refused to take me off Keppra.

At twenty-one years old, I was not given a choice. I was not given a choice, and I was being chastised for speaking ill of something that was supposed to help me. Obviously, my neurologist felt that my brain had turned on me out of the blue. Again. Just like it had when I had my first seizure.

“The only consistent thing about epilepsy is that it’s inconsistent.” That was his epileptic mantra, and with that logic he could explain anything away. The brain is a fickle bitch, and there’s no way to explain how it works. It just does. That was enough for him.

By stating that I had a mood disorder, he was, as doctors do, looking at the symptoms I had been exhibiting for the past four years, pulling from his own knowledge and experience, and throwing out a diagnosis. The problem was that he just kept throwing around vague terms, never able to commit to a specific issue. My symptoms were too wide-ranging to indicate major depressive disorder or any of the other depression-forward mood disorders, and if you were to turn to bipolar disorder in the Diagnostic and Statistical Manual of Mental Disorders, I checked off almost every single symptom, from mood swings to—somehow—both difficulties falling asleep and excessive sleeping. The only problem with this was that many of the symptoms of bipolar, like paranoia and disorganized thoughts, are symptoms of other mental illnesses. Illnesses like AIPD.

It was hard to give anything but an umbrella diagnosis without extensively digging into my psyche. And it was hard to blame my neurologist for not wanting to do that when his responsibility ended at the physiology, not the psychology. Whatever was wrong with me was, after all, the psychiatrist’s area.

What I do blame him for, however, was not doing his due diligence by listening to what was happening, instead of what should have been. Doctors are supposed to be leaders and role models. They’re supposed to be safe spaces and fixers—after all, half of being able to fix a problem is listening to it. In my mind, my neurologist was all of that, but in reality, he was just as apathetic as any stranger on the street. My story, my reactions, unique to me, they happened. They weren’t supposed to, but they did, and you can’t make the guidelines apply to everyone just because that’s how it should be. Statistically improbable and impossible are not one and the same.

Eventually, after I finally broke, he relented.

My mother, knowing her intuition had been right the first time, decided she was going to march back into his office with no more evidence than she had the first time and not leave until he agreed to switch my meds. Seeing as it wasn’t an “emergency,” they couldn’t get me in for two weeks.

“I don’t have two weeks!” My mother found me crying under the bar in our kitchen, my knees tucked into my chest. “I don’t have two fucking weeks!” I had been contemplating suicide—an evil, but in this case, I felt, a necessary one—a means to an end, for a long time. The ideas were starting to really root themselves in my mind in those final days. I was never more than one sharp object or a few pills away from my last breath, and my mother, who hid everything in the house and watched me like a hawk, was more aware of that than I think I even was.

I suffered in silence and shame for 1,392 days because of a medication error. I took 1000 milligrams of poison every day and nearly killed myself because I believed in my doctors. I believed they took the Hippocratic oath seriously and, being able to save people, sometimes from certain death, I believed doctors were the closest things we had to a God.

I put them on a pedestal, and I was naïve.

Emily Duren is a nonfiction writer and wannabe poet. She received her MFA in creative writing from UCR–Palm Desert and, when not writing, can be found watching true-crime documentaries and reminiscing about the ’90s.