Many of you have reached out and asked what medical treatments in 2014 led to the brain changes I experienced. I’ve written a book-length memoir about my experiences that has not yet been published. This is an excerpt from my manuscript. It portrays one scene from a series of chemically induced brain changes I survived three years ago. The format of the book is me sharing each scene with a professor of psychology. The italicized paragraphs represent questions and comments from the professor.
I sat in the waiting area of the salon. I’d always hated getting my hair cut, but I’d known my hairdresser Shawna for years, and our relationship made the process tolerable.
The salon’s speakers blasted music that blazed into my brain. The high-pitched instruments and vocals were like lightning strikes to my cerebral cortex.
I saw movement out of the corner of my eye. Shawna was waving at me. “Blah-as-blah go-blah-on,” she yelled. “You blah-oo-blah like a blah-eaker.”
“Huh?” I stared at her mouth as she repeated the sentence.
“You’re doing that chewing thing like a tweaker. You know, a meth head?”
My lower jaw was rotating. I couldn’t make it stop. Tears welled up in my eyes as I sorted through her words. I sat silently as she cut my hair, watching my jaw in the mirror as it performed its circumambulations.
“You’ve got some bald patches, girl. Like somebody on chemo. I’ll try to cover ’em up,” Shawna said. I squinted and focused on the shape of her lips in the mirror to aid my understanding of her words. I shrugged in return, because my words wouldn’t form.
Later that evening I went out with my husband Alec to buy shoes. When I opened my mouth to speak to the salesman, the words that came out were different from the words I wanted to speak. Each word was followed by nonsense words or a series of random sounds.
“These shoes, shoes, foots, um, bay! Shoes, meep meep!”
I finished the transaction by writing on a notepad and showing it to the ever-patient salesman. Even that was hard, because I struggled to find the correct spellings for the words I needed to use. Then I fought to fit the words onto the page. Alec drove us home. I sat in the passenger seat and waited for my speech to return.
I wasn’t scheduled to see a neurologist for another week. But Alec thought it was a bad idea to wait for the appointment when he realized I could no longer speak at all. He drove me to Local Hospital.
On the evening of August 13, 2014, I arrived at the emergency room. The staff rushed me back for treatment because of my stroke-like symptoms. My speech was gone. Both of my arms felt numb. My jaw wouldn’t stop moving.
A nurse with long, bright pink acrylic nails looked down at me as I lay on the hospital bed, “What’s happening hun?” she asked. I stared at the floral designs on her fingertips. I struggled to understand her words, then tried to answer her question. “I-uh-uh-I-uh,” I stammered out stunted sounds, then took my notepad from my purse and tried to write.
“Do you use sign language?” she asked. “We can get you an interpreter.”
“No!” Alec yelled. “That’s why we’re here! She’s not deaf. She knows how to speak, but she can’t right now.”
“Oh, she sounded deaf—” said the nurse. She tapped her plastic claws on a clipboard and the sound echoed in my head.
“Her speech has been getting worse for weeks, and now it’s gone! I think it’s the amitriptyline!” Alec insisted.
A young doctor, a white man with a hard face, entered the room.
“What’s going on?” he asked. Despite his unaccented Midwestern English, he was hard to understand. I struggled to hear him over the beeping instruments around me.
I scribbled on my notepad.
“NO,” he shouted. “I WANT YOU TO TELL ME! USE YOUR WORDS!”
Tears ran down my face. I opened my mouth and some sounds came out. “Muh-muh-meep! Bay!” There were bright letters dancing in my field of vision. There was a loud choir in my left ear and a bee-like buzzing in my right ear.
A man in scrubs pushed me down the hall for a CT scan, and then wheeled back to the original room.
Young doctor marched in again. He shook a piece of paper that he held in his hand. “Your CT was normal! This cannot be the amitriptyline,” he said. “I’ve never seen a drug reaction like this. This is conversion disorder! I saw your psychiatric history! You’re converting your stress into physical symptoms.”
His expression was that of a man who’d just found dog shit on his shoe.
“I’m going to give you some Ativan. Follow up with your psychiatrist,” He turned and walked briskly from the room.
I tried to say I didn’t want the Ativan. But I couldn’t speak, and no one was listening. Acrylic nurse gave me Ativan by IV and sent me to another room where a woman demanded my $100.00 copay. After I scribbled my deteriorating signature on the receipt, she waved me in the direction of an exit.
What’s the difference in your loss of speech in this time period vs. how you hadn’t been able to talk before in meetings or during therapy?
The difference is before, I could form thoughts and words in my mind, but I was scared to speak, or couldn’t figure out when to speak. It was an anxiety and timing thing. And it only happened in certain situations. I’ve always been able to communicate very well when I’m one on one with the few people close to me. This was different because I could neither form thoughts, nor get the words out. And it had nothing to do with being scared or anxious. I couldn’t even have a conversation with Alec.
Two doctors who knew you very well recognized you were having a reaction to one or more of the drugs you’d been prescribed. But when you went to the ER because you’d become nonverbal, you were told by a doctor who didn’t know you that it was all in your head.
Yeah, pretty much.
Do you think if you didn’t have a psych history the ER doctor would’ve been more objective?
Hell yeah, I do. I’m not saying he would have correctly diagnosed me. He wouldn’t have. He didn’t have the training or the resources. But he probably wouldn’t have treated me like dog shit. Not without the psych history.
But his hubris! Astonishing, isn’t it? I mean, he said, “I’ve never seen a drug reaction like this.” And that somehow translated to therefore I couldn’t be having a drug reaction. And that’s just crazy. Because if he, this little boy doctor, in this little Kansas hospital, hasn’t seen something—then it can’t exist? Are you for real? Do you think he had a clue that Lupron has a known side effect of pituitary apoplexy? Do you think he knew that amitriptyline can cause something called neuroleptic malignant syndrome? Do you think he had a comprehensive pharmaceutical side effect database in his teeny little head? Do you think he’d ever heard of Mast Cell Activation disorder, which makes unusual and debilitating side effects the norm? Of course not!
But even though he didn’t have knowledge, he had power. The power to brand my medical records with the ultimate crazy bitch diagnosis of conversion disorder. A diagnosis that will follow me into every doctor’s appointment I have for the rest of my life once electronic medical records interoperability becomes a reality. You know, it’s one thing to make a diagnostic mistake based on inadequate information—but it’s an entirely different thing to then blame the patient for your mistake, treat them like shit for it, and destroy their reputation through their medical record.
This was a turning point. It’s when I realized that biases are more dangerous than I’d ever imagined. Because once enough authorities canonize a bias as truth, you’re screwed.
Elaborate. What do you mean?
Huh? What do I mean? I’ll try to explain. It’s a manipulation that seems logical on the face of it, if you don’t know what to look for. You know what a syllogism is right? No? Well, bear with me. It’s not that complicated. A syllogism is a form of reasoning where you have a major premise, a minor premise, and a conclusion. That’s the bare bones basics, and that’s all you need to know right now. I’m gonna use a particular syllogism called Modus Felapton here.
You said this particular syllogism? How many syllogisms are there?
Huh? How many? 24 valid ones, but like 256 syllogisms total. Jesus Christ, stop interrupting me! You want me to get all circus sideshow autistic and name all the syllogisms? No thank you.
Anyway, one syllogism that has a special appeal to doctors goes like this: No mentally ill person is worthy of decent treatment from me. All mentally ill people are without easily detectible organic causes for their unconventional behavior. Some mentally ill people exist. Therefore, some people without easily detectible organic causes for their behavior are not worthy of decent treatment from me.
It’s easy for an emotionally motivated, egotistical doctor to see this syllogism as valid. I mean, it sounds good, right? Of course, once you adopt this line of thinking, all hope for offering fair treatment to a patient who presents as mentally ill is gone.
Now, there are lot of things wrong with that syllogism. But do you think that most emotionally motivated egomaniacs will see the problems? I don’t. I’ll point out just a few issues. First, if any of your premises are false, the whole thing falls apart. And we have reason to question both premises. Do you see the odd concept here, the concept of a different character? No?
Worthy of decent treatment, that’s the concept, and it’s a real tricky one. It probably doesn’t belong here in this format, but would you have recognized that if I hadn’t told you? Do you understand why worthy of decent treatment is different? Why it doesn’t fit in? Of course, you don’t, because you’re more emotional than you are rational. But I see instantly that the concepts worthy and decent are different from the types of concepts you usually see in valid syllogisms. They’re very vague, and rest on a lot of moral assumptions.
And then there’s what’s known as the problem of the empty class, which leads to what’s known as an existential fallacy. You’re lost? Hold on, chill out, this isn’t hard. All the empty class means is that you’re referring to something that isn’t there. The classic example is saying all unicorns have one horn. There are no unicorns, so it doesn’t matter what qualities, like number of horns, they have. The unicorn class is empty.
What if there are no mentally ill people? What if mental illness is an empty class? I mean, unless you’re ready to explain how different manifestations of behaviors, which can vary from time period to time period, and circumstance to circumstance, are enduring enough to be considered qualities, like the quality of redness or the quality of having a horn—or even like the quality of having heart disease or diabetes, then your DSM is starting to look like the Big Book of Unicorn Breed Descriptions. Or is it? Am I trying to trick you? Can you even tell? Do you feel manipulated? Screwed and confused? That’s how I felt when I read my medical records. Like I’ve been tricked. Like the doctors had used something that they were supposed to have professional mastery of, and turned around and fucked me with it.
So back to the syllogism. I mean, since you can’t identify the problems in the example, you might be at risk for believing something that looks valid, but isn’t valid at all. There are big problems with that example, but the logical form is actually legit.
There I was with unconventional behavior and no easily detectable organic cause. The ER doctor concluded I was mentally ill and unworthy of decent treatment.