Topics: Drugs, Mental Illness, Medicine, Life News
This is a story with a hopeful ending. Lucky, even. But be forewarned, you have to get through a lot of hopeless, unlucky crap before you find it.
Here’s how it all starts: My first-born son has autism.
Now that isn’t hopeless or, in my opinion, unlucky. Autism isn’t sick or crazy. It’s rigid and routine, a little eccentric. Autism is multiplying columns of numbers easily while being unable to look anyone in the eyes; listening to only one band’s music, and always in the same order, for a period of six weeks; refusing to eat anything orange. It’s also being able to remember the exact date and time you ate a bison burger in Chamberlain, S.D., when you were 6. But there’s a really charming side to all this, a wonderful tilted perspective on life that, if you’re a parent of autism, you come quickly to enjoy.
I was a parent like this.
Until he was 17, my son was unique and funny and odd. He was difficult in some ways but incredibly easy in others. He washed the family’s dishes precisely, went to bed at exactly the same time each night, and sorted our mail into careful piles. He did fairly well in school — above average in math, a little below in social studies — and spent his weekends playing tournament-level chess. He was a loner, but sweet and articulate and very close to his only brother.
Then junior year came. He met a girl, he went to a dance, he thought life was better. And for a night it was. Then the dance ended, the girl decided she was interested in someone else, and the boy became depressed.
Was this cause for alarm? I thought not. Teenage boys routinely get depressed over girls and fickle friends and school dances. It was painful, but I assumed it would blow over. When it didn’t, after six months, I took him to a psychologist who recommended a psychiatrist who put him on a newfangled antidepressant she said would have the added benefit of controlling some of his obsessive tendencies, like stacking the dishes and sorting the mail.
I didn’t want to control those things — to me, these weren’t symptoms, they were characteristics of my son. And I’d fought for 17 years to keep him drug-free. But the psychiatrist and the psychologist and several family members insisted: He’d become unhappy, his routines were getting in the way of his developing a social life. This pill, they said, would help him.
Instead, he gained 30 pounds and began to lose his mind.
It happened slowly, over a period of months. First his grades began to fall. There were some random episodes of violence — nothing major, just an out-of-control moment here or there. A tendency to stand up from the dinner table, after a full meal, and walk to Arby’s for a snack. Eerie giggles that seemed involuntary. A flat expression on his once-curious face.
Senior year, he started an after-school job at an auto parts factory but lost it when he couldn’t keep up with even the elderly workers. He stopped speaking to his brother entirely and even hit him several times. He lost interest in music, computers and chess.
I talked all this over with his father, my ex-husband, who said, “Maybe he needs a man’s attention. Let me give it a try.”
So our now 18-year-old, autistic, depressed and quickly losing ground, moved across town, to live with his father in a small, quiet apartment. My ex worked odd shifts, so our son began wandering the city on foot, early in the morning and late into the night. He told his dad about how he had to fight the bad thoughts that were crowding in his head. And when he wasn’t out walking, he slept a lot — around two-thirds of his life, in fact — despite the fact that he drank 12 to 15 cups of coffee a day.
Together, my ex-husband and I took our son to a highly respected neuropsychology clinic housed in a suburban office building. The doctors there even looked like bankers; they wore regular clothes and carried clipboards and fancy pens embossed with the names of drug companies, rather than stethoscopes.
After meeting our son twice, they conferred with the original psychiatrist (who, we discovered later, was employed by the same large healthcare conglomerate) and came up with an altogether new diagnosis. This wasn’t autism at all, they told us, but “psychomotor slowing” — a form of schizophrenia. Our son was just unlucky, they said sadly, the victim of two devastating neuro-behavioral disorders. Completely unrelated.
It was critical that we begin treating him immediately; they couldn’t stress this strongly enough. We were given a prescription for a brand-new antipsychotic medication with the inspiring name Abilify that was direct-to-consumer advertised in Newsweek and Time magazine. It featured a woman gazing into an azure sky and copy promising the drug would work on the brain “like a thermostat to restore balance.”
We were skeptical. But the experts were firm: He would continue to deteriorate if we didn’t catch this now. Did we want our son to end up institutionalized? In jail? Sick to our stomachs and desperate, we gave him the drugs. Then he got much, much worse.
He stayed with me on weekends, and twice during the workweek he would come to my house for dinner. We would sit at the table — my husband (his stepfather), his brother and sister and I — but my once-reserved older son would only stand over us acting crazy. Humming, shifting foot to foot, screaming if anyone touched him or tried to move him to the side. Often, he would talk back to the people who were speaking to him inside his head, telling him to do things. He would not, however, say a word to us.
He wasn’t eating meals. But he was eating — constantly. After graduating from high school, during the period when he was still holding the voices at bay, he’d started a government job through a disability work program. I’d given him a car and helped him open a checking account during this period of lucidity. Now, he began stopping at fast food restaurants on his way home from work to consume nachos, burgers, brownies and lattes. He ate with his hands and wiped them on his clothes, which he’d quit washing. He stopped bathing altogether.
We discontinued the Abilify, tapering it off as directed. Two days after taking the final pill, he got out of bed at 2 p.m. and stood in one place for a solid hour. My husband had taken our daughter roller-skating; our younger son was at work. It was just me, alone with this 6-foot-3-inch man I’d given birth to but no longer knew. I put my hand on his back and tried to push him forward, toward his shoes. And he turned to look at me — his eyes empty and cold — then grabbed me by both arms and beat me until the neighbors heard me screaming and called 911.
You think you know what crazy is, but you don’t. Not unless you’ve been there.
In the movies, it might be depicted as quaint or flat-out violent. But whichever way it goes — Hannibal Lecter or the wacky old ladies of “Arsenic and Old Lace” — crazy is portrayed as consistent, interesting, narratively coherent. Not so in life.
In reality, crazy is like war. It’s tedious for long periods of time, until it turns around and is devastating. It’s random, senseless, all-consuming, financially draining, destructive, ugly, sickening and gross.
It’s standing in the front yard wearing nothing but torn underwear and trying to control the thoughts of people who drive by. It’s saying yes to every question, no matter what the real answer. It’s drinking compulsively, straight from the faucet, then spewing a stream of clear-water vomit like a geyser.
It’s needing to be tracked down at 5 a.m. and being found, more often than not, at a 24-hour convenience store drinking free coffee and eating package after package of mini-doughnuts. It’s getting escorted out by security guards after hanging out at Target for nine hours. It’s standing directly in front of a childhood home and swaying until the people inside, the ones who now live in the house, call the cops.
For the people who live with crazy — who love crazy — it means answering the phone over and over to say, “Yes, I’m so sorry, where is he? Please don’t do anything yet. I’m coming.” It means never finishing a movie or a book or a television show. Never eating a meal in peace. Suggesting showers that won’t be taken and changing shit-stained sheets and throwing away clothes that have become too soiled to wash clean. And it means going to bed each night with a queasy feeling that something is looming over you, left undone.
It’s paying over and over: for the library books that were lost, the iPod that was worn in the shower, the high-priced vitamins and health foods, the therapies and lessons and groups that are supposed to help but never do. It’s including crazy on every family outing even though you know how it’s going to end because it’s the least wrong thing to do in an equation that contains no right.
It’s also watching people you once loved fade away. Answering their periodic phone calls, full of concern, all their questions about what you’ve done already and what you’re planning to do now, which medications you’ve tried, why you haven’t called the doctor they recommended, whether you’ve read “Dear Abby” today where a letter about something remotely similar appeared.
But it’s knowing, too, that after the phone call, they’ll be gone. You won’t be asked to the next neighborhood get-together or family event. They’re worried, yes, but they can’t let their lives be interrupted by crazy. They have to maintain their own sanity and keep the chaos from mucking up their lives, even if that means letting you go, too.
And you understand, only you don’t. Because you’d like to be done with crazy yourself. In fact, you hunger for it. A full night’s sleep, a meal by candlelight, a midnight drive across town that doesn’t include peering out windows, scanning the dark streets for a mammoth, curly-haired young man in a green sweat shirt carrying a Styrofoam cup of coffee who sways back and forth as he mutters strings of remembered conversations under his breath.
Sometimes you wish for these things so hard that you ask yourself, “How badly do you want this to be over? And what, exactly, are you willing to do to end it?” You hate crazy with all your heart. But the person underneath, you love. You still remember him as a tiny, big-eyed baby who liked to be wrapped tightly in a blanket, a cheerful toddler sitting high in the seat of a grocery cart chanting the word “asparagus.” And you’ll stop at nothing to find him and bring him back.
The thing is: You have no idea how.
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We lived like this for as long as we could, then went back to the team of specialists with our story. Our son wasn’t schizophrenic, we insisted. The medication they’d prescribed seemed to be harming him and our son was getting worse. But they told us we were wrong.
Read it on Salon
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