By T Hudson
Ben—whose name in Hebrew means the Son of the South—has thick chestnut wavy hair, hazel eyes like mine, and a strong prominent nose. He believes that his friends are not his friends at all, but rather members of the Mafia or the CIA or the FBI out to imprison him, harm him, or poison him, that helicopters and motorbikes are instruments of surveillance, dispatched to spy on us all, and that our computers and telephones are bugged.
He is nineteen when it starts. The doctors call it a psychotic break, but the words seem all wrong, because for something to split or tear apart, it should be brittle or weak at the seams in the first place. My son is whole. He takes a surfboard into the ocean each weekend, heaves his lithe body onto it and glistens with the elements. My son writes. He plays Rachmaninov’s piano concerto by ear, and he has a scholarship to one of the most prestigious public universities in California. That’s why it can’t be right that he has schizophrenia. Can it? Can it really?
We live in a prized home with sought after views in the oldest and quaintest part of Hollywood. Ben is going to be a doctor and I will proudly join the ranks of British immigrant Yiddisher mamas. I’m just waiting for it to happen, so when it doesn’t I blame myself. Maybe I haven’t loved him enough or maybe I’ve loved him too much. Either way it is my fault.
It begins in the laundry room in the early hours of the morning. I find Ben cold and alone tracing the wires of the telephone circuit board.
“This is how they are monitoring us,” he whispers, his face stricken, his breath sour. “We have to cut some stuff out, change the receiver, I can do it.”
“Who?” I ask. “Who is monitoring us? And why.”
Ben puts a finger to his lips, and quiets me. His eyes look a shade darker with him framed as he is against the white plaster walls. He begins rifling through the tool kit, although he doesn’t seem quite sure of what he is looking for.
“Don’t do anything yet,” I say, my voice barely audible.
I look at my bike hanging from the rafters, the spokes still muddy from my off-road ride. The room contains everything we want to hide away from the neat order of the rest of our lives, eight years worth of clutter, and a washing basket of damp smelling clothes. It is frigid, especially at this late hour. Built into the hillside, carved out of the bedrock, we are underground. I need to sweep the floor as if to make room for us. It is imperative.
I take the broom and work it around Ben’s size nine feet, buying us time—time to hope he has a fever-induced delirium, something that might pass with a couple of Advil and a good night’s sleep.
Ben has never rerouted wires before in his life and, besides that, we have suspended our landline in favor of cellular phones. These wires that my child is obsessing over are part of a defunct apparatus from a bygone age.
“Let’s go upstairs,” I offer, swishing the last dust motes across the grain of the old hardwood floor.
Ben agrees albeit reluctantly, and walks behind me with a languid gait, one I hardly recognize. Once seated at the dining room table I take his temperature, smooth my palm across his forehead as I have countless times before.
“98.6,” I say. “Normal.”
The dining room boasts large sash windows that open to a hefty forty-foot drop. Ben stands against the pane and with the first light I see how thin and pale he has grown in recent weeks. I feel my throat tighten as denial gives way to fear. “Did you take drugs?” I ask him. “Hard drugs?”
He stares at me and shakes his head as if I am the one who is suffering from delusions.
Ben receives the first of his many diagnoses from Doctor Kumar, a Santa Monica-based psychiatrist with a smile fit for a Colgate advertisement, and an office that smells of Murphy’s lemon oil. Both things make me feel queasy. I want to match the doctor’s confidence, to show him I am a calm sensible mother. I push my feet flat to the ground in a seated mountain pose and attempt a grin.
It is all so very awkward. My face is as lifeless as a Beverley Hills housewife on Botox and the soles of my Vans shoes slide on the marble floor. I look at Liz, my partner, Ben’s co-parent. Should I have brought her? Our very togetherness spells unconventionality. Just a few decades prior to Ben’s break and it would have been us being treated for insanity. Homosexuality—a pathological disease.
I turn to Ben, the boy at the center of the assessment. He is not really here at all. Unable to make eye contact with any of us, he sits hunched on the leather sofa staring at his untied laces, his hands clamped over his ears as if he can hear things that we cannot. Voices.
Outside the sea is choppy and grey. “Great views from here,” Liz says, and I wonder how she can say such a thing in the midst of such uncertainty.
“Psychosis.” The doctor uses the word psychosis and it bounces on the wood of his desk like a table tennis ball. I try to bat it away from us, this label that will define my boy, but somehow in my desperation for answers it is as if I open my mouth and swallow it, where it remains stuck in my throat. In time Ben will be classified as suffering from Schizoaffective disorder, and then he will be labeled with Paranoid Schizophrenia, terms that are still so loaded with stigma they are hard to pronounce.
Dr. Kumar prescribes Ben an antipsychotic called Abilify. He gives us some samples to tide us over until we can get to the pharmacy. Liz drives us home. I sit next to her clutching the thin boxes of pills with one hand and keeping my other hand poised above the child safety lock in our Subaru station wagon. Who knows if Ben might try to jump out of the car into oncoming traffic? I don’t. He is unpredictable. He is psychotic.
“Why don’t you take one now?” I ask, waving the medicine at him. “It might help.”
Ben complies, and takes the small blue oval pill with a swig of his leftover Pepsi. Liz keeps her eyes on the road, but the crease deepens between her brows, the only clue that she is nervous. The Wilshire corridor of skyscrapers blocks out the remnants of daylight and throws shadows at us as we move toward evening.
The night of Ben’s diagnosis, once he has settled into sleep, I lay awake with my back to Liz, and listen to the Santa Ana winds snake around the house and pry at the balcony doors. Hot and mysterious with their accompanying scent of jasmine they are purported to make people crazy. Am I crazy? My grandmother was crazy, locked up in an institution for all of her adult life, until she died in the confines of the psychiatric ward. I never knew her, but in pictures we have the same plump bodies and earnest expression. What if Ben has inherited her propensity for delusions? Should I have dared to have children when I knew about my family history of chronic mental illness?
Liz throws her arm around my waist and reels me in to her chest as if I am a prize catch that she doesn’t want to lose, as if I am a good person, as if I didn’t cause all this trouble. Pressed up hard against her I remain adrift, unmoored.
The night blackens, infinite and mocking, and it is confirmed. I read how 1940s psychiatrist Fromm Reichmann and his followers would have held me responsible—not for birthing my child, but rather for how I raised him. Mothers such as myself were labeled as Schizophrenogenic, clinically defined as dominant, overprotective but basically rejecting. I like this notion. If it is something I have done or said to cause Ben’s brain to short-circuit, to be flooded with dopamine, to lose cognitive function and short-term memory, then surely a change on my part will suffice to bring about a cure.
Fromm Reichmann has died, and his ideas have long become unpopular. I need another theory.
I turn to thoughts of Ben in utero, and chastise myself for being stressed during my pregnancy, for having a baby in a relationship that I knew wasn’t tenable. I see my child as a toddler, crying bitterly as his daddy packed and left. I remember coming out as a lesbian, trundling across east London at all hours to see my new girlfriend, with baby Ben and “Heather Has Two Mommies”—the book I insisted upon reading to him—in tow. And I was busy—always so busy as a single parent with three part time jobs.
I look for other signs along the road, something definitive in life’s narrative. There was a black cat. Aren’t they meant to be lucky? Her name was kitty. Not very original I know. I cleaned her litter tray out when I was pregnant with Ben. Could I have contracted Toxoplasmosis, a disease that can be passed onto one’s unborn child and cause a propensity to schizophrenia in later life? I try to mine my memories. Did I have flu-like symptoms during the first trimester? Did I fail to wash my hands properly after scooping the stinking cat shit and gravel into the dustbin?
Alone and frustrated as the sole caretaker of my children, I once used those same hands to swipe Ben around the head. And in 2001 I took him at the age of eleven away from everything and everyone he knew and loved, and I landed us in America. He despised me for that.
The morning after his diagnosis and his first antipsychotic, I awake to find Ben perched on the edge of his bed with his knees bouncing up and down—his hands on top of them trying to still his movements. His eyes twitch and his tongue flicks in and out like the bearded dragon he kept as a boy. He walks around the house for no reason other than his mind and body won’t let him be still.
By mid-morning he is ravenous. I observe him in the kitchen, where he builds a triple-decker sandwich. He slathers the bread with an odd combination of fillings—peanut butter, cheese and salsa—and he shuffles between the fridge and the counter more times than seems necessary. His hands shake as he piles a mountain of potato chips on the side of his plate. I sit next to him on the couch and feel the motion of his legs shaking, choppy and rough.
“I feel like there is something inside of me, something trying to get out,” he says between bites. His distress makes my stomach lurch, but so does the way he crams his food into his mouth and chews with his jaws agape, showing the contents of the predigested meal.
I place my feet flat on the floor in an attempt to quell the effects of his activity.
“It has a name, the restless syndrome. Akathisia.”
“Akathi what? Can you spell it for me?” I ask Dr. Kumar.
The line is full of static, and though I press the receiver to my ear, his voice is thick and fuzzy like a Dalek from Doctor Who. It takes three attempts to decipher his words.
I stare at the word in my diary. Akathisia. I have doted the i’s with so much pressure that they break through the page.
“What on earth can we do?” I ask. “He can’t live like this. It’s as if he has St. Vita’s Dance.”
“It is counteracted by taking Benztropine.”
“How, what is that?”
“It’s an anticholinergic drug to block the neurotransmitter acetylcholine.”
“So basically he needs to take a second prescribed drug to counteract the side effects of the original prescription?”
might be helpful.”
“I can fax a prescription to the pharmacy.”
“Thank you,” I say.
I wanted to say fuck you, because it felt incongruent to be grateful for Ben’s diagnosis, for drugs that cause such debilitating side effects, for a sickness that carries a stigma so unthinkable and misunderstood. Fuck You.
I pick a stray dog’s hair from the leg of my brush cotton pajamas, and look at Ben. Remnants of sandwich cling to his beard. His eyes scan his empty plate.
“I’m still hungry,” he says.
I expect him to call me Mummy. Mummy fits with his physicality, the food on his face, and my desperateness to take care of him.
There is a part of me that wants to call Liz at her fast-paced workplace, to defer to her, to let her handle this. She knows how to ask important questions, make the right calls. I know though, right down to my marrow, that this is my responsibility. Ben is my boy, my baby. He was eleven years old when I arrived on American soil, with him and his older brother in tow. Every one of those eleven years prior to our landing in the host country, I carried Ben—in my womb and then on my hip and always in my heart.
As I sit with the phone I smell myself, musty from angst, and having worn my nightwear for the last 24 hours. Doctor Kumar told us that there was a possibility of Ben experiencing suicidal ideation during the first few days of taking Abilify. This isn’t the only risk. The instructions folded concertina-like in the pill carton tell me about Neuroleptic malignant syndrome (NMS), a rare and serious condition that can lead to death. I have to be alert for signs of high fever, confusion, sweating, and changes in pulse, heart rate and blood pressure. The medication can also cause restlessness, agitation, orthostatic hypotension (decreased blood pressure), decreases in white blood cells, seizures, overheating, dehydration, and difficulty swallowing that may lead to aspiration or choking. Long-term side effects include increases in blood sugar levels (hyperglycemia), changes in cholesterol and triglyceride (fat, also called lipids), weight gain, and uncontrollable movements of face, tongue, or other parts of body, known as tardive dyskinesia, which could be permanent.
“I’m still hungry,” Ben says, “but I also feel sick.”
He returns to the kitchen. I hear him rummaging through the food cupboards, as if he might stifle the thing inside of him with another sandwich.
When we arrive at the pharmacy, Ben is convinced that people are following us. Worse still he believes they intend to harm us. He sneaks up and down the incontinence aisle looking for them, and I traipse after him with the Depends on my right and the Gold Bond on my left.
I watch his calf muscles—strong from surfing—propel him forward, and I notice the course dark hair on his legs.
We reach the counter together and I ask for my son’s prescription in my most charming English accent, in the hope that it might condone the fact that I am still in my pajamas. I have been too scared to turn my attention away from Ben for long enough to get dressed.
“Let’s sit here,” I say as we squeeze into plastic chairs between the blood pressure machine and the weighing scales. We wait for the medicine, and I feel a tiredness descend upon me as if I have been waiting and watching for so long already.
Upon our return to the house, Ben joins me in the kitchen where I administer his medicine.
“Take this,” I say, pushing the spoon toward him. “Doctor Kumar says it might be helpful.”
Ben swears under his breath. I feel his irritability reinforce my own. The tension that has built throughout the day pulls at my jaw muscles.
His restlessness finally ceases, but it is replaced by something called Akinesia—a noticeable decreased spontaneity. In Ben’s case, it is as if his brain has suffered such exhaustion that he is too tired to wake up. I hate seeing him this way, but Doctor Kumar believes that the Abilify will cure him and bring him back. Who am I to argue?
In a way, it is as if I have a third son. The real Ben is MIA and this other man is taking over his body. Like an uninvited guest, a changeling, an intruder, he claims me as his mother, claims Ben as his host.
When Ben closes his eyes and his breathing settles, I walk into the living room of our home, look up to the high beamed ceiling in all its Moorish architectural beauty, and cry, “Mummy, oh Mummy, please help me,” even though she has been dead for five years.
I am lost and hopeless, but I am also the primate at the zoo. I cling protectively to my son. I recall the months after his birth. Ben, the moon-faced child who suckled at my breast as we sat in Bubbe’s old rocking chair, swinging through time, my fingers weaving through his locks, inspecting his scalp for cradle cap, until my hand grew tired, until I felt him tugging at my arm, insistent, insatiable, as if there was something I might find in the curls atop his head, in the parting or under the full fringe.
It was almost two decades ago that I nursed my boy.. I miss the soft creak of the old wood, and the way we swayed through the air. I miss my son.
In the days that follow the diagnosis Ben lays in bed with his science book discarded by his side. His hair is greasy and flecks of dandruff decorate his shoulders. My new son is becoming sturdier, most definitely heavier than the old version. He has food down his shirt, great yellow splotches of curry or something similar. I hope the stains will come out in the wash. I can control that, at least.
Ben’s mid-terms are looming. He tries studying.
“I can’t keep track of what happens from page to page and chapter to chapter,” he says, pushing the book further away. He looks so young, so immature. His eyes are pained, as if he has a migraine.
Doctor Kumar advocates lessening triggers in the environment.
“School and the deadlines of academia are very stressful. Maybe you take a leave of absence just until you start to feel better?” I propose.
“I don’t know if I can give up,” Ben says from his position on the couch. “I worked so hard to get into that school.”
“It’s not forever Ben, just for now, until you’re feeling better.” And as I say it I wonder exactly what better means.
“Okay,” he says, biting his lip, holding back more disappointment than either of us can bear to witness.
We don’t mention some things, like the fact that Ben has become nocturnal, and given up showering and changing his clothes, or that underneath his thick brown hair and intact skull, his neurons and synapses are misfiring; a new circuitry is at work, one that neither of us can understand.
When Liz comes home from work after yet another long working day, to find Ben just waking up, I love the fact that as she stands in the bedroom beside me she doesn’t say, “Oh brother, what in God’s name,” or any other strange Americanism that might further my panic. She twiddles her thumbs and I notice a slight flush to her Celtic complexion. “We can work this out,” she tells me.
Ben wakes us up at some unsociable hour by using the bathroom that is en suite to our bedroom. I listen to the loud stream of piss hitting the bowl. I know he hasn’t lifted the seat. He stopped doing that when he got sick. I had empathized the first few times. I recalled the verse from my childhood that Mum had sung to my brother. “If you sprinkle when you tinkle, please be sweet and wipe the seat.” I vowed to reproduce the little ditty and frame it on the wall as a gentle reminder. I never did, and now I was clean out of sympathy.
“Don’t piss on the seat,” I shout.
Ben stays on the couch the entire next day. I make him a cream cheese bagel and call his name a couple of times.
He finally wakes up as the sun is going down. I crack the door and peer in on him. His skin is pale and the stale air about him smells of sweaty feet. As I approach him on tiptoes, I see that his eyes are narrow and watery. He works without his glasses, engrossed in a violent computer game. I can tell by his repetitive thumb movements on the built-in touchpad of his laptop.
The cream cheese bagel has hardened and yellowed on the plate. Ben has entered the world of the game, stuck in cyber land, his brain an extension of the beeps and bleeps and jingles of the apparatus.
I return to my bedroom and turn on my computer to read The New York Times. After a while, I hear Ben munching on the day-old bagel. I find an article in the health section.
By cutting off unused pathways, the brain eventually settles into a structure that’s most efficient for the owner of that brain, creating well-worn grooves for the pathways that person uses most. Synaptic pruning intensifies after rapid brain-cell proliferation during childhood and again in the period that encompasses adolescence and the 20s. Robin Marantz Henig. August 18, 2010, New York Times Magazine.
The beeps from Ben’s war game and the words of the article keep me awake and fearful long after I have finished the piece. When I sleep, it is disturbed. I am hyper-aware of Ben. The invader. This other child playing war, far away in a world, where I cannot reach him.
In the five years since T Hudson wrote this piece, Ben has returned to university. The fight is not over though. The world is still plagued with stigma and fear when it comes to mental illness. It is for this reason that Hudson writes about what it means to be the parent of a child with schizophrenia. She hopes to garner strength from sharing her story with others and help bring about a greater sense of understanding of the subject.
That was incredibly powerful and moving and I applaud you for your courage in writing it. May you and your son be comforted and blessed.
Wow! Fantastic piece, as a behavioral health nurse this is spot on and gives a glimpse of how horrible this disease is.
That was such a touching and poignant story about love and mental illness. We need to hear more about this disease…How it affects and controls our world whether we like it or not. It takes great courage to write so delicately about a topic so heavy and secretive. I hope there will be some balance and calm in both you and your son’s life. Remember, you must be the oxygen on your face first then you can help your son. Breath…..