I really wanted to go to the ballgame. I’d never been to the new sports arena or seen our home team play, except on television. People had been excited all summer long. The city was celebrating its entry into the championships. Imagine my surprise when a coworker offered me a free ticket.
“Dude! I’ve got box seats for Friday night’s game. My wife’s invited a single friend of hers, so we could call it a double date!” He was so stoked. “It’s gonna be awesome! Whaddaya say?”
A chance to see our boys on a winning streak? Playing against one of the nation’s best and most beloved teams? A night out with a girl my buddy’s spouse had chosen with me in mind? How could I possibly decline an offer like that? Easy. In a word: avolition.
“I can’t go. I’m not doing anything Friday night.”
He stared at me in disbelief, as if I’d deliberately snubbed him. Like too many times before, I had unintentionally withdrawn from socializing and lost a chance for friendship, community, maybe even romance, because I said no when I wanted to say yes. But I couldn’t. And I didn’t. True to my word, I stayed in. Because I couldn’t comprehend what “going out” meant. I was pretty sure I’d gone out before, I’d accepted free tickets before, I’d even gone on a blind date before. Understanding the rhythm was not the problem, comprehending it was. I understand that somewhere people eat haggis, but I’ve never seen it on a menu.
Avolition is one of my more confusing symptoms, especially for my family and friends, because it appears as if I just don’t care. This is not by choice. A comorbid symptom, avolition is defined as a pronounced restriction of initiation and production of meaningful goals. The word literally means “poverty of will.” It is one of the five main negative symptoms of schizophrenia, often mistaken for laziness, disinterest, or ennui. When avolition’s driving the bus, I can want to do something, but I can’t figure out how to do it or why I should. I lack the energy or power to make it happen. As a result, I miss out on life. I miss out on me. I don’t realize there’s a hole until I can’t find the shovel. Again, it’s not by choice.
In the symptomology of schizophrenia-spectrum disorders “negative” doesn’t mean grumpy, pessimistic, or gloomy. Negative in this context means that from time to time I will be unable to enjoy my hobbies, music, social interactions, art, food, or sexual activities because my mind interprets them all as joyless or dreary, and the “half-full or half-empty” cup isn’t either one. Try as I may, I can’t even find the cup, let alone have a context for the existence of said cup. Which sucks if I’m thirsty for water, coffee, juice, laughter, friendship, family, or love. Simply put, I’m blank. I am not there. I don’t get to be there. But you are. Our culture is. And it has a choice. I understand that people can become over-saturated with information regarding social awareness where discrimination of any kind is concerned, but apathy and cynicism should never be on the menu.
So. Advocacy. While I’m sitting in a chair with nothing outside the window but more nothing – and no idea why it’s not there or how it came to be, or if I even care about the window or the chair or the sitting – I have this undeniable craving to text a friend, call my sister, make holiday plans, play a video game, rent a movie, take a bath, eat, sleep, run. I have a determination to get involved and stay involved. I have a voice, a story I want to share. I’ve got experience, strength, and hope that I long to convey, to let someone else, like me – sitting in a chair somewhere with their own nonexistent cup – know that they aren’t alone, but that if they were, it’s not their fault, that they don’t have to take it lying down, and that there’s no dignity in letting the bullies win while we just wait for the cup to materialize. There is a solution.
Since negative symptoms are directly attributable to schizophrenia itself, they will always be a part of my life. This fact won’t change. I accept that. Unfortunately, there is no clinically validated treatment for avolition, so I came up with a personal fix of my own: I make a commitment and don’t allow myself an excuse. I create a choice.
In the words of Tony Stark, the Iron Man, “It’s not about me. It’s not about you, either. It’s about legacy. The legacy left behind for future generations.” Suit up and show up.
Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.