Benjy, Awake

On a blossom-scented spring day, my son Benjy, almost eleven and off kilter, begged me to help him kill himself. It was a day I will not forget, even if I live to 104 and cannot remember, from one hour to the next, the angles of my children’s faces. The request took my breath away. I saw the glinting river, the Charles, out my car window, and for a fraction of a moment felt the urge to drive us into its arms. It would be quiet, after years of struggle, in the water’s cold embrace.

This was a fleeting thought. My pull, for the most part, has been toward life — living it, feeling it intensely, helping Benjy to choose it if he can. It is not clear to me that he can make that choice.

Benjy is a boy who wishes to die.

To have lived a mere ten years and long for the end is a state of mind beyond belief. We are taught that a child inclines toward his birthdays, and for the most part our experience bears this out. Yet here is a boy, not badly behaved, not unintelligent, possessed of a family who loves him and food in sufficient quantities, who has looked life over and decided against it.

 

This is a story I need to tell, as if the telling itself is a charm against disaster. It’s a story about the weight of the world and the pull of sleep when you are tired of being awake.

And it’s about Benjy. You know now that Benjy is not dead, although at times he longs to be. He is not dead, but death is a siren song to him, and he drifts ever nearer to it. He does not have cancer, or bacterial meningitis; those things would be easier to comprehend than the mental illness that has claimed him over the past several years. It’s not exactly a choice, this wish to die; it’s a chemical inflection, an over- or under-production of this or that brain enzyme, a porousness or lack of penetrability in the left or right hemisphere. It’s over stimulated synapses, or synapses asleep on the job. I do not know what it is, but I assume it lies beyond volition.

So, Benjy wants to die. Not every minute. Not even every day. But enough. Enough so that at a time of life when other children receive a measure of independence, can stay at home alone while their mother shops, or their father takes a sibling to her piano lesson, Benjy must be watched. His fantasies are often fantasies of self-harm. He is fond of things that have sharp edges and can draw blood: knives, scissors, fingernails, teeth.

Our family life revolves, to a large extent, around Ben. Is he safe? Is he sad? What does he need, and how can we give it to him? He is not a greedy boy; he does not ask for this kind of attention. But we are driven by fear. His father and I, and his older sister, too, are terrified of his trajectory, his attraction to pain and, with typical inconsistency, the stillness of death. Life is not still! I want to plead with him. It’s cluttered. It chafes. It’s the color of violets. Choose it! But until now I have never been able to utter those words to anyone but myself, as if in speaking them aloud the fact of Benjy’s gravitation toward death becomes imbued with truth, with gravitas, and with shadows of the grave.

 

The first time Benjy wanted to die was when he was four years old. He was at his preschool, a program in a Boston public school: four children with special needs and 16 typical children. Lots of kids in that school had parents who did not buy or borrow books, and the school invited older students in to read to them. On the day he talked about ending his life, a teenage girl from Boston Latin High School was reading to him — it might have been Nate the Great. Benjy was not supposed to be one of the children hearing a story that day; I am an English professor and his father was once one, and we live in a house full of books. (Every time we’ve moved, the moving men have marveled at our collection. None of them has ever filled an entire moving van with book boxes before.) But there he was, listening to a 16-year-old girl parse an Easy Reader, and he interrupted her and said, “I would like to throw myself under a truck. Or out the window.”

I wasn’t there, so I don’t know whether surprise or dismay flashed across her face, or whether she gasped or laughed nervously. All I know is that she high-tailed it over to the principal and reported the incident. Because the next thing that happened was I received a call at work notifying me I needed to pick him up within 30 minutes. There’d been some things said, and he could not come back until we could prove he was safe.

I talked to my husband Lars on my cell phone the whole way.

I asked him, “What could that mean, ‘There’ve been some things said’?”

“The F- word?”

“But they’re kicking him out!”

“Just until he’s safe.”

“What kind of words could make him unsafe?”

And that, my friends, is the $64,000 question.

 

It’s not words that make a child unsafe. Not precisely. But thoughts sometimes do. In Benjy’s case, the thoughts grew darker and darker, drawing him closer every year to that region of dysregulation that is full-scale mental illness. The impulse to throw himself under a bus — remarkably well-defined for a four year old’s impulse — became, when he was eight, the desire to rise from his fetal posture of despair, pick up a knife, and try to summon the courage to plunge it into his heart in the three seconds before I made it to the kitchen after him. For a moment we stood face to face, he with a steak knife clutched in his hand, I stunned out of my wits. I had the presence of mind — just — to snatch the knife out of his hand, and then I had the mother’s instinct to hold him as though I’d never let him go, but I did not have the ability to ask him what on earth he was thinking when he grabbed that knife. I was not ready to hear his answer.

This was only a beginning. Since then, every so often Benjy has yearned for his own death, succumbed to his desperate, dark thoughts. Too many times, he cannot leave his bed and face the world, and for the longest time we never really talked to him about what was going on. Of course, I asked him regularly how his day went, how he was feeling, whether he’d had a good sleep. I listened to him talk about this boy who treated him as if he didn’t exist, that girl who giggled as he passed. But neither Lars nor I seemed to have the words needed for certain discussions to take place, nor were we prepared to hear him say certain things — I want to die and have a plan. I know exactly where to slice my wrists, for example — so we took him to therapy once or twice a week, gave him his daily meds, and lived our lives in a state of detachment, or denial. We loved him beyond measure, were gentle and caressing, advocated for him tirelessly, but there were places where we simply did not tread. There was so much we had to learn, so much strength we had to muster, before we could walk over that way.

 

We might have guessed from the start that something was not right with Benjy, and not just because he was an impassive baby, unresponsive, never crying once until he was six months old. Eventually we knew he was delayed. That he was on the autism spectrum (he was two when we received his first diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified). But there were early signposts, earlier than the wish to throw himself under a bus, pointing to psychiatric disorder.

The first indication of that (convincing only in hindsight) was his obsessive fear of crabs. He was three and had never seen a live one. In spite of the fact that we lived in a neighborhood of Boston that lies 35 minutes — 20 on the underground — from the water, crabs scared the hell out of him. He had nightmares about them. Would not allow us to darken his room at night lest a mob of crabs, evidently dark-loving creatures, should scuttle out from under his bed and pinch him. The irrational fear itself was not really a concern; how many kids fear monsters, or witches, or bears coming out of their closets? I myself, as a six-year-old, was frightened by men in space suits. So crabs seemed reasonable, in a way.

But here’s where Benjy differed from most kids: he talked about crabs ceaselessly. At bedtime. At breakfast. In the car. Even at school. Eventually we would learn that his perseveration was a sign of extreme anxiety, but at the time we just thought, how on earth can we get him to shut up? Of course, we couldn’t. It was a test of saintly patience, and only sometimes did we pass.

What special educators call “perseveration” — that was a word I had to learn (it’s not in the dictionary) — took over our lives. Compulsive repetitions of both consequential and inconsequential things, all demonstrative of pervasive anxiety. Are you my friend? Are you? Are you? Are you my friend? At which point he was talking to the back of a fleeing child. Mama, can I have Percy and Thomas and Gordon? Can I? Can I? Percy and Thomas and Gordon? This would go on for hours, for days. For weeks. It was the symptom of an aching hole inside him that would yawn wider and deeper as he grew older and the Thomas the Tank Engine obsession evolved into other unsatisfiable desires.

That was a time not only of massive meltdowns — a sort of perpetual imbalance, his celestial sphere tilted at an uncouth angle to the earth — but also of maddening perseverations. The same questions over and over. Do I have a friend? Do I? Do I have any friends? Will you feel me better? Will you feel me better in five minutes? If I cry, will you feel me better? (As if he lacked the seeds of resilience that have germinated in most children that age and needed a gentle push toward self-regulation.) He drew the same picture — a human figure with large head and eyes, porcupine hair, and hands like giant sea urchins — again and again at preschool; his entire art portfolio, at the end of the year, was composed of these creepy figures, and every one of them represented himself. Perseveration is a twin sister to obsession, and Benjy’s obsessive foci dominated his life. His machinery would catch and stall in one place; it was only with great delicacy that we could finesse the works enough to set him temporarily free.

But there has been movement, too. Benjy is 11, almost 12 now, and his obsessions, his perseverations, have grown wider and more diverse. Some of them are dark and sophisticated: guns; first-person shooter games, about the use of which we negotiate endlessly; war; the end of the world; giant meteors striking Massachusetts; and for a while, Anne Frank. On the lighter side: Lolcats, hermit crabs, fish of all sorts, tadpoles, YouTube videos about animals (“My Pet Ferret”; “My Pet Fennec Fox”). We hear about these things for a while until they drift away and are replaced by new obsessions. My son is a person in constant flux.

This changeability is perhaps most evident in the contrast between his periods of illness and his healthy interludes. When Ben is despairing, he shreds his fingers. He bites his lower lip swollen and bloody. He dreams about cutting his own flesh. And he longs for an end to it all, a permanent, lifeless sleep. When he is happy — and sometimes he is — he becomes somebody else, someone familiar but long absent and deeply missed: an old friend returned from distant sojourns. His handsome face relaxes and so does his body. He is often enormously funny and appreciative of other people’s humor. Best of all is his incredible sweetness and kindness. People, especially adults, remark on this all the time. His empathy, his thoughtfulness, is quite unusual for a child his age.

The loss of this boy would not be our loss alone; it would impoverish the world. I don’t mean simply our own world, the constellation of people in our social universe who love him and whom he has touched, but people not yet met, not yet born, who would benefit from knowing Ben — from his generosity, his solidarity, his quirky and impressive (if highly focused) intelligence.

It was the unbearable prospect of such a loss that kept me, over many years, from inquiring too deeply into Benjy’s intentions and from really hearing his words when he told me, “I want to die.” I consider this failure on a colossal scale, and yet it was self-preservation, too. I needed to stay whole so I could keep my family afloat — even if staying whole meant harboring only a partial understanding of my child and what he was suffering. At that time in my life the truth was more than I could carry.

And still I do not completely understand, even though in many ways we are alike. We weep together over those heart-rending ASPCA commercials and when we hear about soldiers dying in Iraq and Afghanistan and the broken families they leave behind. We love the sound of the g-string on a violin, and the way butter and confectioner’s sugar form a sweet sort of paste on hot fried dough. Yet I don’t understand his impulse to inflict pain on himself, to end his life. I don’t know why failure at a video game, an Internet Explorer shut down, or simple boredom, causes him extreme distress. These things are foreign to me.

Ultimately I cannot truly know Benjy. What I do know is that there’s an insatiable emptiness in him that cannot be satisfied. That he is lonely. And I know this: that in spite of his loving family, almost always with him, he is on his own. It is this reality that I struggle with the most. Like death, mental illness must be negotiated alone, even with a phalanx of therapists and doctors and parents standing by on alert.

Ask most any parents of a child with severe mental illness and they will be familiar with this aloneness, will have seen it in their child. They will also tell you about the loneliness of landing on the wrong side of the financial tracks. I call this unfortunate landing the economics of mental illness. Because it is almost impossible to hold down a job and care for a child who wants to die or is delusional or bi-polar. The two-parent households are the lucky ones; they may be broke but they’ve avoided the dilemma of the single parent who has children to support and one of those children needs full-time parenting. This dilemma is not a pretty one.

My professional life has been a casualty of Ben’s illness, and so has our bank account. Because I can no longer work much, we have grown smaller. This is due to our need, financial as well as emotional, to let go of things. As our footprint shrinks our house seems to swell; we have sold, donated, and trashed things left and right, and suddenly shelves are orderly and closets spacious. The chaos of books and papers has disappeared from horizontal planes, and rooms that were once oppressive with couches and pillows and chairs now seem vacant. This is like the removal of an enormous weight. Last month we figured our two TVs would fetch us about two hundred dollars on Craigslist, which would finance two months of psychiatric meds. Our daughter Saskia, who has already made countless sacrifices for her brother, overheard our plotting and dissolved into tears. Benjy, who does not watch television, scarcely looked up from the table where he was folding paper.

“Will you buy me some origami paper before we become poor people?” he asked, frowning slightly at the pink pig evolving under his fingers.

Benjy’s is the only room where space shrinks as his illness waxes. When he is most dysregulated he acquires a lot of stuff. During a recent crisis he crammed the most beautiful paper guns — pistols, semis, the odd German rifle — into bookshelves, on top of his dresser, on his desk; he strewed them on his floor. He lived in a fevered state of creativity, but he only created weapons. When he was not rolling and taping he was watching YouTube videos about making paper guns. Who would have guessed that there’s a whole subgenre of YouTube video: paper weaponry. Benjy had guessed. He spent hours and hours watching maladjusted boys and men explain the intricacies of rolling a double barrel, or constructing a magazine with paper bullets inside. Then, after a while, he no longer needed the tutorials. He Googled certain types of guns — how he knows what they’re called I have no idea — and after observing the original for five minutes created stunning, intricate replicas out of white paper.

I try to see the positives in these creative interludes. The irony is he used an old draft of my novel about a mother who abandons her autistic son in a forest to construct the guns. Along their barrels you can read little jolts of anguish, lines from the story of a family coming undone.

 

The day I made the decision I could no longer work, Benjy told me, “I’ll never be a scientist.” He sounded sad.

We were in the car, about to drive away from his school. I turned around and caught his eye; he glanced away. It is hard for him to bear a direct gaze. “Why not? You’re good at science.”

He hesitated. “I don’t think I’ll live beyond 11.”

His words hung heavy in the space between the back seat and the front; they had a palpable presence in the car. I felt oddly detached at that moment; later the pain would feel like a thousand knife cuts to my face, my chest, my legs. When I found my voice I said, “You’ll live to be a dad and a grandpa, maybe even a great-grandpa.” Then it hit me, what he’d said, and I began to shake.

“Oh, dear God,” I thought. And I am not a praying woman.

A week later, maybe two, Benjy begged me to help him kill himself. The world was suspended for one breathless moment. It was that blossom-scented day in the flush of spring, a day of high clouds and fitful sunshine, and again we were in the car. When I heard him say those words, everything went still — even my heart. But then, after a moment, I found I could speak, and I asked him something new. I finally said the words I had not, for the whole seven years of this mooning after death, dared to speak.

“What,” I said, staring at the dappled road, “do you really want? What do you mean when you say, ‘I want to die’?”

He considered. Then, in a low voice, barely audible, he replied, “I want to put the world on pause and get off. Just for a while, because it’s too hard.”

At first I was struck only by the sadness of what he said, but then I really heard him. I opened myself to the nuances of his comment, and what it signified was, “I don’t want to die. I want relief. I want rest. I want to absent myself for a while.” Those things are different than death. Relief made my body go limp. Inexplicably, I was shaking. And then I was grinning.

“You know,” I said, more confident than I had ever been that he would live, “if you kill yourself you can’t come back. Death is forever. You know that, right?”

“I know,” he murmured. “An endless sleep. But I’m awake now.” He laid his cheek against the car window and in five minutes he was dozing.

Those three small words, I’m awake now, told me what I needed to know. They made me feel elated and weak at the knees. All those years I’d been afraid to ask or had not found the right way to do so. I had dreaded the answer. And now I’d done it, and the answer had not killed me. I was alive, and so was Ben — alive and awake.