Tardive Dyskinesia

I am known as a mental health advocate. I give speeches sometimes, but mostly I just write.

Normally, when you think of someone with mental illness, you think of someone sitting in the dark, looking out the window, feeling blue. At least, those are the depictions you see in the commercials for antidepressants. I’m not a big fan of those commercials, because they really understate the suffering that people go through. People with various types of mental illness struggle to get dressed and get in the car and go to work in the morning. They put on a brave face and power through, when they are going through an indescribable amount of pain. There are a lot of courageous people out there.

I am doing well these days. I have had a pretty good run, since graduation. I was an absolute mess in May, having paranoid delusions about how someone or something would sabotage my degree. I’ve been good since then.

But here’s an aspect of mental illness that people don’t spend a lot of time thinking about—dealing with the effects of the medication. For example. Prolonged use of the various atypical antipsychotics can result in tardive dyskinesia, which is uncontrollable shaking of the hands and twitching of the facial muscles. I have this—it hasn’t spread to my face yet, but my hands shake. It comes and goes. Sometimes, I will pick up a glass in a restaurant and I’ll be spilling water all over the table. Sometimes, I struggle to put a forkful of food in my mouth, because my hands are shaking so badly. About ten years ago, I joined a slow-pitch softball league. I used to be one hell of a pitcher in slow-pitch softball. Couldn’t do it—had the shakes. Walked six people in a row and switched places with the shortstop. It was benign for a number of years, but it’s gotten to the point where it’s starting to be noticeable in social settings. People will ask about it—are you nervous or something?—and then I’ll explain the cause, and it will be awkward for everyone. It fucking sucks.

That’s not the only side effect, either. The other big one is weight gain. I am—count ‘em—70 pounds heavier than when I started taking the meds. And my cholesterol shot up, too, which is another symptom. Sure, I’m not super conscientious about my diet, but I actually eat a normal amount of food. And I do the intermittent fasting thing, too—no help. I actually took Ozempic for a while last year, and lost 25 pounds, but it got expensive, and I quit, and the weight went back on. I give up. This is also irritating because every dickhead has diet advice—keto, paleo, do this, do that, and I’m like, listen, it’s not going to help. Everyone has opinions. And there are sexual side effects, too, and let’s just say the meds don’t make your johnson bigger.

So here is the thing. They are starting to come out with some new bipolar meds that don’t have the metabolic or sexual side effects, or the tardive dyskinesia. I have tried them. They just don’t work for me. They actually make my bipolar disorder worse. Latuda, Vraylar, there are others. I have tried everything. I’m on one of these medieval meds that’s about two steps up from Haldol. Well, at least it is generic—it costs me about $20 a month.

So you might be wondering why a lot of bipolar (or depressed) people don’t take their meds, even though they work. This is pretty much the reason—they turn you into a fat eunuch. So would I rather be fucking crazy, or a fat eunuch? Most people go for fucking crazy. Of course, that is a bad decision—that is how people end up dead or in jail. But yeah, one of these days, my face is going to start twitching, which is not really optimal when you’re a public figure. They actually recently came out with meds to stop the tardive dyskinesia, but then you’re on meds on top of meds, and who wants that?

There is a saying that you should be gentle with people, because you don’t know what kind of burdens they are carrying. That is a pretty good saying. 16.5% of the population is on psych meds of one kind or another, basically one in six people. They are all dealing with these side effects. Also, finding the right meds that work is a challenge. I had the best doctors in the world, who pretty much got it right on the first try. For most people, they’re dealing with psychiatrists of varying levels of competence, and it’s a process of trial and error, and let me tell you—switching from one medication to another in rapid succession will really fuck you up. You might ask, why are so many people on medication? I’m not really sure I have the answer to that question. Clearly there are more stressors. Being online doesn’t help. Isolation doesn’t help. Lack of community and friends doesn’t help. For me, it’s purely a case of bad genetics. I signed up for 23&Me and downloaded my genetic code and plugged it into Promethease and found out that yup, I won the genetic shit lottery. Anyway, I’m not an expert on this stuff, so I’m just going to shut up about it.

But I have to tell you—the medications I am on: lithium and risperidone—are miracle drugs. There is no other way to describe it. I don’t get high off of them. It’s not like an antidepressant, which has stimulative qualities. I just don’t think crazy stuff. Here’s an interesting stat for you—lots and lots of writers are bipolar. There was a study done years ago, that found that four out of five poets were bipolar. Four out of five! There is a clear link between creativity and bipolar illness, and it’s well-known in the scientific literature. Kay Redfield Jamison did some work on this years ago, and identified a number of well-known writers were bipolar. So let me tell you something else—when I am off the meds, my writing is fucking amazing, just mad genius. I read some of the stuff I wrote 20 years ago, before I was diagnosed, and it was pure fluid intelligence. I’d love to go back there, but I can’t. Again: I’ll end up dead or in jail. So every night, I gulp down a bunch of pills and sleep for eight hours, and I go into work, and I write my mediocre drivel every day. But I am alive.

And that’s what’s at stake. For someone who’s never experienced suicidal thoughts, it is probably difficult to comprehend how they could happen. I’ll explain it: I think about it pretty much all the time. Enough so that I have to lie about it from time to time. Though I have a pretty good relationship with my psychiatrist at this point—I’ve been seeing him for thirteen years. I’ll be struggling, and he’ll ask me if I have suicidal ideation, and I’ll admit it: yeah, but I’m not going to actually do it. He knows the drill. He’ll increase the dosage and I’ll power through and come out the other side. A less experienced doc would pick up the bat phone and call an ambulance to whisk me off to the land of plastic spoons. Anyway, I have seen a bunch of people commit suicide over the years, and I see what it does to their friends and families, so it’s not something I really want to do. But when things get really bad, you forget.

Life is good. I have very few complaints. I actually consider mental illness a blessing. I mean, would I like to be a ripped, 185-pound stud, raking like an All-Star, partying like a rock star, and hammering like a porn star? You bet I would. But that was not the hand I was dealt. There’s something unique and special about my brain—it doesn’t work in some ways, and it works really well in other ways. I wouldn’t trade places with anyone. I definitely wouldn’t trade places with Elon Musk—that guy is off his meds for sure.