A Mind of His Own
He looks healthy today. His blue eyes are bright and excited as he peers into the camera. Caught in the frame of the picture is his kitchen counter, cluttered with the ordinary: a white laundry basket, a few dirty dishes, a favorite jacket. It’s but a small sliver of his unassuming Everett apartment, a momentary glimpse into the life of a seemingly unassuming man. His blonde hair is swept to the side with gel, flattening down the uneven edges of his homemade haircut. He’s proud of his self-made hair, it’s an expression of his whims of the moment. Sometimes he dyes it a washed-out purple and sticks it up into a mohawk. Occasionally he’ll buzz it down to below military length, letting his pale head gleam in the sun. But more often than not, it’s blonde, neatly trimmed, and reminiscent of the dandelion fluff that used to cling to his six-year-old head. Today, he looks like himself, or at least the Taylor everyone remembers him to be. His slender face is fixed with a perpetual smirk and his lanky torso dressed in a yellow t-shirt. It’s almost impossible to tell there’s a darkness lurking underneath his sunshine exterior, a manic companion whispering in his ear.
My older brother Taylor was 19 years old when he was diagnosed with Schizoaffective Bipolar Disorder. Roughly 3% of the population suffers from this rare combination of psychiatric disorders, an often-misdiagnosed illness all its own that presents a disturbing mixture of symptoms. The schizophrenia manifests itself through vivid hallucinations (audio or visual), delusions and disorganized thinking. These typical indications of psychosis are medically described as ‘positive’ symptoms, whereas ‘negative’ symptoms can range from having difficulty in social situations, a decreased interest in personal hygiene, and what Taylor describes as the “blanket effect” — a feeling of suffocating nothingness. The bipolar side, on the other hand, can take him on a rollercoaster ride through irrational behaviors and crippling depression. Sometimes the bipolar symptoms will be dangerously stimulating, producing a riptide of euphoria and racing thoughts that can incite him to max out his credit cards on surround-sound speakers for his car. Understandably, Schizoaffective Bipolar Disorder can lead to problems at work or school, making it difficult to function in daily life. Taylor has tried to hold down several jobs since the onset of his illness, but each one was short lived, like the pizza delivery job at Dominos that ended on Fourth of July when the fireworks sounded like bombs, paralyzing Taylor until he regained enough consciousness to rush home in a blacked-out panic.
There are always good and bad days for Taylor, and each one is a resoundingly unique experience. One morning may bring an unbearable dysphoria that makes him physically incapable of leaving bed, but the next sunrise could pull him into his red Thunderbird for a spontaneous road trip. The bipolar high can help sometimes, like when it compels him to get a whole week’s worth of stuff done in an afternoon. This is the exception, however, as these manic manifestations generally provoke him into spending needless amounts of money on video games or impractical pieces of furniture. But Taylor is extraordinarily resilient and has the rare ability to mold a joke out of anything, finding humor in the darkest of places, and that’s his secret weapon. When there is no one to turn to, and there often isn’t, he turns to himself. The voice in his head, lovingly named Manuel because of his slight Mexican accent, holds conversations with Taylor as if he were just a friend sitting on the couch beside him. They chat about whatever comes to mind, like which light saber color they would be if they both had to choose. But of course, Manuel can also leave Taylor gasping in terror as he screams indistinctly in his mind after a particularly rough afternoon. The worst, Taylor tells me, are the bugs. His eyes visibly darken as he describes the feeling of horrific black beetles crawling all over the skin on his legs, unable to be wiped off no matter how desperately he scratches. He has a scar on his right thigh that’s small and purple from where he stabbed his leg deep with a pair of scissors in a last-ditch effort to make himself snap out of his nightmare last year. I remember that call from the hospital, when he casually mentioned the open wound in his leg half way through our conversation. I make sure to never miss a phone call from him.
It wasn’t always this way. Back in 2011, after deciding he needed a way out of the house that didn’t involve college, Taylor decided to join the military. He enlisted in the Air Force at age 17, so young he had to have our father sign a consent form for the government. But Taylor has always been younger than everyone else; his sharp tongue and natural brilliance helped him to skip 7th grade and graduate high school at 16 with a college English course already on his transcript. His intelligence didn’t mask his unwavering disdain for authority figures, however, and this became painfully apparent with each failed assignment and exam. Taunting teachers and exasperating our parents was found to be more enjoyable than the banality of sitting through material that just came naturally to him. When he signed up for the Air Force and took the ASVAB (the test that determines your aptitude for certain military jobs), he scored a 99 — the highest possible mark. But it was his DELAB (the test that determines your aptitude for learning languages) that landed him the prestigious job as an Arabic translator. After finishing basic training in sweltering Texas summer heat, he graduated as one of five honor graduates in a class of 600. Soon after, he was shipped off to Monterey, California to attend language training at the renowned Defense Language Institute (DLI). He loved it there and often dreams of going back, even though this was the very place he lost his mind.
Surprisingly, it wasn’t the disciplined rigor of the military that pushed Taylor to the edge of his reality, but instead something much less obvious. During the first week of basic training, a sharp fall partially tore two ligaments in his wrist, an injury that eventually compounded over the course of several months as he completed his daily pushups and pullups. The two resulting surgeries and recovery pushed him out of his intensive language classes at DLI since he couldn’t miss more than a few days of lessons at a time. He was left with no choice but to start his course all over from the beginning again, twice. The first time it happened, he’d already completed 22 weeks of training. Growing disheartened and depressed in this cycle, Taylor began deluding himself into thinking he was never going to graduate. He eventually visited a base counselor who recommended that he be put on medication, which led to him to being prescribed an anti-depressant with harsh side effects, including a dramatically increased risk of suicidality. The drugs did nothing but fog his brain with a kind of toxic introspection, which ultimately pushed him to the edges of desperation.
One afternoon, after not sleeping for six days straight, Taylor made up his mind; he was going to kill himself. He calmly got in his car and drove to the airport where he bought a ticket to Texas in cash and flew home to say goodbye to his family one last time. After spending all his money on the flight, he had no way of paying for a taxi to the suburbs. Instead, he took a free parking lot shuttle to the farthest edge of the airport and started out on foot. With nothing but a backpack carrying a few pieces of clothing and a water bottle, he hiked twenty-two miles along the highway under the blistering sun. He rationed his water sparingly and managed to trek for hours until he collapsed behind a strip mall a few miles away from our grandmother’s house. Even in peak physical shape, his body shivered from dehydration and his skin cracked into a flaming sunburn. He hadn’t told anyone what he was doing until he called our grandmother to come pick him up. He ended up staying with her for two days while he recovered from his mental coma. Taylor tells me this period is a blur and feels more like a nauseating dream than any form of reality. His memories are spotty, but he does recall the point where he was forced to phone his sergeant to notify him of his reason for going AWOL, a military offense punishable by a month in jail and a fine. His sergeant flew to Texas and escorted him all the way back to California. He was never charged with a crime. When he returned, he was forced out of his language training and re-assigned as an information specialist, a job that made use of his incredibly expensive top-secret security clearance. Taylor can’t tell me much about this position, since he was working directly with military and state secrets, although the coy smirk on his face shows me he desperately wants to. He really enjoyed the fascinatingly cryptic work, but inevitably, a darkness seeped back into his consciousness and Taylor found himself wishing to die once again. With a plan already in place, he called a friend who luckily noticed his concerning behavior and brought in his superiors for help. He had served in the Air Force for 18 months before he was sent to the mental hospital for his second attempt at suicide. It was there that his life changed forever.
The hospital has come to mean many things to my brother. He tells me that in hindsight the experience was constructive, but at the time, all he could focus on was getting out. At first, they made him wear paper clothes and sit in a plastic room with couches made of uncomfortable rubber. They doled out medicine by the fistful- 35 different kinds of medication to be exact. He had to attend three to four self-help groups and therapy classes a day and meet with his doctors nearly constantly. Everything was meticulously controlled. He wasn’t allowed access to his cellphone, only the hospital landline, so most people in his life didn’t know where he had disappeared to. Taylor remembers feeling desperately alone, having only three visitors (our father and two close friends) during his entire 90 day stay. The average patient in the hospital was there for a maximum of 28 days. He set the record for the longest stay in their history, the previous one only reaching 45 days in total; that was one record he never imagined or intended to break. He was not able to be released until the Air Force sent their own psychiatrist to evaluate and diagnose him, as the government wouldn’t accept a ‘civilian’ diagnosis from the hospital. Unfortunately, they were perpetually bogged down in bureaucratic paperwork, so it wasn’t until much later that he was granted his freedom. Things moved quickly for him after that. He was given just three days to pack up all his belongings on the base in Monterey and move because the Air Force had officially discharged him from duty.
It was in the hospital that his schizophrenia symptoms appeared. About a week after he arrived, he was lying in bed when he heard a stranger’s voice talking to him. At the time, he didn’t think much of it. But, after mentioning it to his doctors, who became instantly concerned, he too, grew frightened. Hallucinating is a strange phenomenon in of itself; no one wants to believe they’re crazy or that they’re living in a partial falsehood. At first, you find it impossible to believe. This doesn’t last long as you soon begin to question your wavering reality, wondering if anything has ever been true. This is what happened to Taylor, and it was this downward trajectory that left him in a tailspin of depression, anxiety and mania. Nevertheless, like most other things in his life, Schizoaffective Bipolar disorder had underestimated Taylor. Even in the midst of psychosis, with multiple brain-addling drugs causing painful side-effects and muting all expressions of emotion, Taylor somehow found his way back. He resorted to what he knew best and attempted to outsmart his illness before it ruined him. He would sit up every night, finishing his last cigarette of the day with a scavenged nurse’s medication handbook he eventually read cover to cover. He knew everything there was to know about his medications and what they were doing to his brain, even as he struggled to reconcile his own existence. He made close friends with the staff, the orderlies and nurses. They became his confidantes, his game partners, his stand-up comedy audience. In fact, it was the staff that made him realize that he was still human in a world so white and sterilized of human compassion. When he was stuck haunting the hallways in nothing but a pair of socks, as shoelaces were prohibited at the hospital for security reasons, a kind orderly found him zip ties and Velcro to strap his shoes to his feet. And after noticing Taylor spending hours listening to the radio on the hospital’s lone boombox, a counselor started making him mix CDs filled with new music. She made him four in total. He remembers them fondly, he tells me as he lights up a new cigarette, the smoke wrapping around his face and wistful gaze. No one will really know what Taylor feels in these moments, but if it’s anything like what reflects out of his crystal blue eyes, I imagine it’s something painfully beautiful.
Today, Taylor spends his days mostly alone in his apartment on the outskirts of Seattle. He’s one of the lucky patients; after being discharged from the military he was approved for full disability and social security payments, meaning he never has to work another day in his life. In turn, his life has come to revolve around the hospital, but this time, it’s different. He commutes forty-five minutes to the VA hospital at least once a week where he has doctor appointments, dentist appointments, appointments of all kinds. However, he’s learned to live without constant medical intervention in his life, and tells me with excitement that he’s recently gotten off his anti-psychotics, although he still takes another five medications. At the height of his illness post-hospital, he took more than 15 different kinds of medications a day. Some of them were just to counter the side effects of the other medications, a never-ending cycle all too common for those in the hamster wheel of the pharmaceutical industry. When asked how he managed to reduce his medications so significantly, he explains that he only achieved it through years of hard work and re-wiring his brain. When he’s feeling overwhelmed, he can close his eyes and do a body check, an exercise he learned and perfected in Cognitive Behavioral Therapy (CBT). Taylor takes his mental training as seriously as he did his military training, and practices sensing his feet all the way up to his head in order to remind himself he has a physical body beyond his often deceptive brain. Sometimes he will recite a Buddhist Chant for a couple of minutes, even though he doesn’t know what it means. There’s something about the combination of words, rhythm and intense concentration that helps him find a semblance of peace from the onslaught of tireless thoughts circling inside his mind. Medication is only 30% of treating mental illness, he tells me. The vast majority of treatment comes from education and a willingness to believe in progress, despite your fears.
Channeling his previously explosive mania into productive obsessions, Taylor spends hours of his day researching mental illness, medications and brain chemistry. He excitedly tells me about his current project, a paper he’s writing on mood changes related to Tramadol off-label use. He absolutely loves sharing his obscure scientific findings, and often will spend countless hours discussing things such as the minute differences between anti-depressants. But for him, one of the most difficult aspects of his Schizoaffective Bipolar Disorder is the social misperception and stigma that’s attached to mental illness in general. He’s found that most falsely correlate psychosis with being a psychopath, immediately assuming that anyone with Schizophrenia is a serial killer or deranged monster in sheep’s clothing. In reality, Schizophrenia is a misunderstood illness and does not naturally make a person violent or aggressive, as is the assumption. When people, from doctors to family members to strangers, find out about Taylor’s illness, their reactions are often colorful and impulsive. They will either treat him like he needs constant help or see him through a lens of confusion and distrust, and sometimes, if he’s lucky, they will treat him like a normal person. He’s even had parents tell him they don’t want him around their children. Although the worst, he tells me, is dealing with his family’s inability to see him as an adult. They will admonish him with judgmental callousness, giving him lectures on the ramifications of poor life decisions that are tailored more for a child than a 24-year-old man. It’s been an extended battle to get them to understand him, and the scrutiny of his closest relatives is sometimes unbearably painful. In a perfect world, everyone would be better educated about what it means to have ‘mental illness.’ However, it’s a difficult situation for Taylor to be in when he must explain himself to others. On the one hand, he wants to open their eyes to his normality, but on the other hand, he’s always anxiously awaiting an antagonistic reaction. But, progress continues to march on, he surmises, mentioning that even seventy years ago he would have been locked up and electrocuted.
Taylor has learned to love his life, even though his path to self-acceptance has been a treacherous one. He finds solace in the little things, like raiding dungeons in World of Warcraft with his online friends or going to his Uncle Sean’s house for a cold beer and a game of pool. Some evenings he’ll head over to his favorite game shop and play Warhammer, a battle of wit involving meticulously painted figurines and dice. His best friends don’t judge him because they know him, he explains to me. Sometimes it can be hard for people to peer beyond the veil of a diagnosis or label to see you for who you are, but Schizoaffective Bipolar Disorder is but a small part of the whole that is Taylor. His friends, myself included, continue to crack jokes at his expense just like we used to, understanding in our own way that it’s these moments of genuine friendship which make him feel not quite so alone in the world. Taylor lives in a world we will never have access to, a place far away from our comfort of certainties and acceptance. But it only takes a conversation to be given a window into a mind of brilliance. His perspectives on suffering can breathe light into your fears with an infallible resolve. He’s gradually learned to turn his illness into a source of strength of others, pushing beyond his own social isolation to reach those in need. He even questions whether he can call his experience a mental illness. Is this just who he is? Where does the diagnosis end and his personality begin? A lot of philosophical questions come up for him, most of which, he admits, he will never have an answer to.
Happiness isn’t always elusive for those suffering from psychosis. It’s all a matter of perspective, as far as Taylor is concerned. He derives his happiness from unexpected pleasures, the kinds of things he used to avoid as much as possible in his previous life. He finds beauty in helping others now, and for the past several months, he’s been assisting our uncle who is undergoing treatment for colon cancer. Jobless and with plenty of time on his hands, he regularly spends most of his days helping out the family. He also sets himself goals, one day at a time. During the beginning of his treatment, his only goal was to take his medication at the same time every day, something that’s surprisingly difficult to accomplish. His sleeping medications made this burdensome, since they would knock him out for twelve hours at a time, so he had to learn how to adapt and remain flexible. Part and parcel of therapy is effective goal therapy, something he emphatically reminds me over and over again. Start small and work your way up, remaining realistic about what is achievable without underestimating yourself, he explains. And stay away from ‘you’ instead of ‘I’ statements since this allows you to avoid responsibility and project your problems onto others. He’s great at explaining the concepts of motivation, partially because of his own intense amount of therapeutic research. He’s decided he wants to become a peer counselor and has signed up at the VA hospital to work with other veterans in their recovery process. He wants to be what his nurses were to him so long ago during his own stay, and he knows helping others on their path will help him grow as well. The best way to learn is to teach, after all.
For now, Taylor is healthy. His grin lights up his small apartment and radiates through the computer screen as we video chat. His weight is stable, his sleeping is normal, and he is happy. He’s come to terms with how things are. His Schizoaffective Bipolar Disorder challenges his perceptions of what it means to be him, to be human, to be alive. And his philosophy on life has changed; it’s not distressing or unfounded, it’s just part of it. He’s gone from dreading the morning to seeing the potential and endless opportunities at the start of each day. By re-wiring his brain to automatically eliminate any negative thoughts before they surface from his subconscious, he’s learned how to live his life beyond the suffocation of a troubled existence. I’m glad to have my brother back, but I knew he wasn’t gone before; he was just in the shadows of a creature he couldn’t help but create. I tell Taylor that I have one last question for him before I sign off. What is the one thing you love the most in the world? Taylor pauses before he responds, looking dead center into the camera. “Being me,” he says.