Courtesy of Amy Leal
I used to fantasize about becoming a wildly successful author or influential teacher; now I fantasize about having a map of my son's body and brain, showing me the areas of hurt and how I can help. Gone are the phantom shelves of books I would have liked to write, the modestly tucked-away folder of imaginary teaching awards.
When I first knew that my son, now 3, was on the autism spectrum, I had hoped for the possibility of a high-functioning form, but that was before I learned he also has a rare form of epilepsy and a host of immunological problems. Now I just want him to be functioning—that is, alive and able to eat and walk and perhaps even improve over time.
Parents of children on the autism spectrum often talk about a number of comorbid conditions that can accompany the disorder—immunological dysfunctions, frequent ear infections, intractable strep, gastrointestinal disorders, rampant yeast, inexplicable regressions, allergies. I did not guess that my son would have all of those as well as epilepsy (there is an 11- to 39-percent overlap between the two conditions), or that our concerns over his seizure disorder would begin to trump our fears about everything else. I also did not realize that he was to have more than one regression, which would rob him of all of his hard-won language and communication skills, forcing him to retreat into a wordless and inaccessible world where I could not follow.
I put aside everything else to try to help him. I've taken time off from teaching to relearn the very process of learning. I don't research Keatsian arcana anymore; instead, I am trying to learn the silent physical rhymes and looking-glass puns of sign language. "Stars," for example, are inverted "socks." "Number" is a dancing "more." "Thank you" is just a touch away from "good." "Sorry" is "please" closed up and hiding. Never, of course, has my research seemed more essential.
If I only had that imaginary body-brain map that haunts my dreams of sleep and wake. This dream map is accompanied by a computer printout created by a divine or magical source; for some reason, it has been printed on an old daisy-wheel printer. In my fantasy, even as I read the accompanying otherworldly pathology report, I know my son has been divinely healed, but I must read on anyway, obsessed with wanting to know the details.
Courtesy of Amy Leal
And what do I see? There are numbers with decimal points tallying up substances in the body that have not yet been discovered. There are lists of illnesses and syndromes that have yet to be named. There are also some more-mundane results, which I skim. Some of these are scarcely surprising (needs more Vitamin D!), and some are a bit unexpected (an inherited predisposition to weak kidneys, perhaps). At the end is a summary, oddly dry for something generated by mystical means. The gist of it is devastating: It's my fault. My fault. Thank God he has been healed in time.
But then I wake from my fantasy and my son is not healed and I know nothing. I can still feel the slightly electrical and gritty texture of that printout in my hands, but I now have no notion of what it said.
And yet I feel so very fortunate. An acquaintance of mine has a son who has seizures 100 times a day, grand and petit mal and everything in between. Another friend has a child who needs multiple surgeries. Another has a child with a brain tumor. Another has a child she suspects does not even know she is there. Mine once said, "I love you" before losing the words, and he once tried to sing my "I Love You! Yes I Do!" song back to me, though he struggled to make any sounds at all and could be deciphered only by those who hung on every breath and half-gasp. And I do.
As an English professor, I teach the art and science of words—their history and literature, their prose and poetry, their logic and their magic. When I plow through the niceties of syntax with my students, I try to pique their interest by pointing out something the essayist Lewis Thomas once noted: Grammar and glamour (originally, "to cast a spell on") share etymological roots, and it is no accident that we use the word "spell" to mean both the alphabetic configuration of a word as well as an incantation. Words have power; the proper concatenation of them can conjure a sunny pleasure dome with caves of ice, as Coleridge conceived it, and enact the impossible.
But how do I empower someone without language, sign, or gesture? What is it like to experience aphasia, dysnomia, auditory and visual distortions, and variable physical sensations? At times I imagine that entering into my son's sensory world—his own particular neurocosm, perhaps I should say—is a bit like walking into Lewis Carroll's Wood With No Names:
"Well, at any rate it's a great comfort," [Alice] said as she stepped under the trees, "after being so hot, to get into the—into what?" she went on, rather surprised at not being able to think of the word. "I mean to get under the—under the—under this, you know!" putting her hand on the trunk of the tree.
"Words are, to us, the Medium of Thought," Defoe wrote; "we cannot conceive of Things, but by their Names." But what if we do not think in words? I can imagine a mathematics of scent, a language of taste, a grammar of images, a syntax of sensation, a symphony of touch, but I suspect that my son's neuroverse goes beyond what I can conceive. For example, even when confronted by a new location, my son can gracefully weave in and out of obstacles and steps and chairs with his eyes shut, having apparently formed an interior eidetic or physical map of the place in his mind simply by pacing it a few times.
Often I am reminded of Borges's mnemonist, Funes, who sees the world in such detail that he has trouble generalizing concepts:
It was not only difficult for him to understand that the generic term dog embraced so many unlike specimens of differing sizes and different forms; he was disturbed by the fact that a dog at three-fourteen (seen in profile) should have the same name as the dog at three-fifteen (seen from the front). ... He was the solitary and lucid spectator of a multiform world which was instantaneously and almost intolerably exact.
The animal scientist, activist, and autism memoirist Temple Grandin likewise described how she had to study hundreds of pictures of dogs before she could generalize what the word "dog" meant. Was this what my son experienced? And if so, why not accept things as they were? I could not let it rest, because he kept regressing, and something seemed to be gnawing at his myelin sheaths, his gray matter, his white matter, his guts and blood. I kept having a nagging feeling that to ignore what was happening, or to accept it and work with it, was to enable a potentially progressive illness and give it leave to ravage my son. Day Mom tried to be in the moment and enjoy her son's ever-evolving neuroverse; Night Mom raced against the clock.
I suspect that my son's neuroverse goes beyond what I can conceive.
I began to feel like Penelope, weaving and unweaving her handiwork each day, making and unmaking her message, waiting for a return. In our house, we learn how to roll a car back and forth with each other, we lose this ability, we learn it again, we lose it again, we put the car back in its box and wait for health to return so we can start all over once more. My son's speech progressions and regressions began to seem as predictable and intractable as the moon cycles. Each month I would wait for the murmurs to begin again and gradually become a babble, a fragment, sometimes a word or even a phrase—only to hear them falter and fade once more before flickering out again altogether. I became so desperately sad each time his voice died away again.
"Our boy sure is cute," my husband said a year ago, watching our child play in a cardboard box decorated with ABC's (the Alphabox, I called it). "Yes, he's very cute," I concurred. My son, excited to hear his beauty thus praised, jumped up and exclaimed proudly, "I'm cute!" A month later, he was struggling even to make an "m" sound and remained nonverbal for eight long weeks. Sign language also came and went, so we began to rely on a series of symbols called the Picture Exchange Communication System.
After the apparent seizures began to stretch into one or two minutes and became accompanied by tremors and eyelid fluttering, our pediatrician finally referred us to a local neurologist. A sleep-deprived EEG showed that my son seemed to have seizure activity originating in the right frontal and temporal lobes (and, to a lesser extent, the left side as well) that were threatening to become a generalized tonic-clonic (grand mal) seizure and was most activated when he was ill, tired, or sleeping. Our developmental pediatrician, however, was skeptical about my son's continued loss of language; in her estimation, he had never really mastered any communicative system and thus had never truly lost it. A second neurologist said she was 95-percent sure that my son had epilepsy and ordered an emergency weeklong EEG.
I began to learn a whole new landscape of language—interictal (between seizures) and epileptiform and occipital, mapping the mind-mountains of Gerard Manley Hopkins and the spikes and waves of neurobiology, "cliffs of fall / Frightful, sheer, no-man-fathomed," the chasms and paroxysms betwixt sleep and wake. Or, as the medically trained John Keats put it, "Yes, I will be thy priest, and build a fane / In some untrodden region of my mind, / Where branched thoughts, new grown with pleasant pain, / Instead of pines shall murmur in the wind: / Far, far around shall those dark-cluster'd trees / Fledge the wild-ridgèd mountains steep by steep."
During the day in the hospital, I kept my nervous thumb poised over the red seizure-activity button, ready to push if I saw anything amiss. At times I confess that I was so disturbed to watch my son's alternating fear and depression that I would have sprung him from his crib-cage if I had known how to free him from the EEG electrodes. At night, when I could no longer see his body, I studied the brain squalls on the screen as he twitched into sleep. Sometimes the brain activity looked like a pen-and-ink drawing of the rising tiers of Huangshan Mountain, or the needle-sharp points of Aiguille du Midi, or the lacy peaks of the Himalayas. A couple of times I saw a terrifying high-voltage spiking so sharp and close-knit that it looked like a tangle of discarded hair from a brush. This, I later learned, is what a seizure looks like. I would also learn the names of these epileptiform patterns: spikes and slow waves, as well as some slowing—that is, when the brain quiets and slows down and sometimes, in the worst instances, stops.
In "Photography Extraordinary," Lewis Carroll imagines a photographic invention that cannot only record the "operations of the mind" but also establish "a mesmeric rapport... between the mind of the patient and the object glass." I thought of this when I first smelled the collodion glue that held the electrodes to my son's head—it was made of the very substance Carroll applied to glass to make his photographs. EEG's do not, of course, record thoughts, just electrical activity in the brain, but I became mesmerized by the brain-wave patterns nonetheless and tried to read them like vapor patterns from the Pythia's chasm. I was astounded to watch what happened when my son listened to Mozart: All his brain waves danced together in time to the music, the patterns for once in sync and at peace, soaring and rippling in joy.
The second neurologist eventually diagnosed my son with epilepsy as well as ESES, or electrical status epileptics in sleep. The theory about ESES is that it can result in brain damage each night and the inability to learn and process new information. In the weeks that followed, I was surprised to come across this description, in the journal Epilepsia, that expressed in more-impressive terms something I have described above:
"Indeed, it seems appropriate to label ESES as the 'Penelope syndrome: Spinning during the day, spiking during the night,' in which the diurnal 'spinning' to make up a thread (a neuronal network) is erased by the 'EEG spiking' during sleep."
In the ancient world, the ailing would go to sleep in one of the temples of Asclepius in hopes of a cure and wake to have their dreams interpreted by a physician. Aristotle noted, "Diseases or other affections about to occur in our bodies... must be more evident in sleeping than in waking moments." But what does it mean when the dreams themselves are the ailment? Or, more accurately, the threshold of the realm of dreams? "For two are the gates of shadowy dreams," Penelope tells us in The Odyssey, "and one is fashioned of horn and one of ivory." Perhaps there is another gate as well, made of obsidian—sharp enough to be used as a surgical tool, polished in ancient times into a dark mirror, ushering in dreams that neither distort nor depict reality, but rather reflect something beyond or before or between: the chaos of nonbeing and nonthought, where memory disintegrates and words fade into silence.
To rule out cortical dysplasia, hamartomas, or other structural problems in my son's brain, he had an MRI a couple of months ago. As I waited the three long weeks to hear the results, I tracked down the images and tried to give myself a crash course in neuroimaging—not the best way to go about getting information, I confess, but part of the obsessive impulse to research that often accompanies an academic's passion. Each night after my son fell asleep, I fixated on the scans' various shadows and lumps (or lack thereof) and swellings, inconsistencies and irregularities, to the point where I began to have nightmares of the images.
But one night as I pored over the thousand and one pictures, I also began to marvel at the beauty and mystery of my son's brain. The brain is a mandala, both bud and branch and shifting kaleidoscope of thought, and one of the oddest parts about its structure is that though each side does something distinct, when the tissue is healthy, both halves appear nearly symmetrical, image and inverse of each other. How is this possible? And what does it mean? The mind is a map and a mystery, at once a cross, a cruciferous plant, a humble scrap of sprang embroidery, a rose window, mental nut, a Cretan labyrinth, and a galaxy: evidence of the canniness and uncanniness of the watchmaker—or perhaps lacemaker—of the universe.
To quell the nightly epileptiform activity and prevent it from worsening, the neurologist put my son on Depakote, which seemed to make some things instantly better (eye contact, motor planning, and affect) and some things worse (wailing, perseveration, spinning, mood swings, and severe feeding issues). Though my son's speech did not return, other things began to come back that I had not realized were gone. We are still tinkering with medications, trying to stabilize his ever-precarious health, and searching for the optimal course of treatment. The drugs will not repair the damage wrought by the seizure activity, nor has he exchanged an autism diagnosis for an epilepsy one, but we now hope we can help him to heal.
And as he struggles to relearn what he has lost, I appreciate anew the wonder and mystery and neurological complexity of his neurodiverse mind. He has begun jumping for joy again, something his pediatrician calls an "autistic stereotypy" but which inspires me to jump along with him. Sometimes lately he seems to have been reincarnated in himself. Every time he gives me that naughty look from the stairs that I had never thought to see again, or giggles at his own shadow, or lifts his arms to be danced in his nightly ritual of song, I feel as though part of me is healing, too.
Amy Leal has taught literature at Syracuse University and Claremont McKenna College. She first wrote about her son for The Chronicle Review in the 2011 essay "Little Boy Lost" and is working on a book about autism.