Elijah's Cup: A Family's Journey Into The Community and Culture Of High-Functioning Autism and Asperger's Syndrom
By Valerie Paradiz
The gift of loss is many flowers blossoming. So many roses and tulips that there is little time to think. Once the loss has struck the mind with all its thorn and color, there is nothing left to do but begin the telling. A crisis comes. A crisis goes. There is a smell of roses in the room. I know the words I use to do my telling are but transient scents. They are empty-handed gestures. They are medical descriptions. They are explanations that draw just one narrow picture of what has really happened to us.
When the relatives call on the telephone, they express their concern and pity, asking questions about Elijah to which I give the diagnostic answers.
"The EEG was inconclusive. It showed no epileptic activity, no lesions or a focus that might explain the seizures."
Elijah has swiftly become a medical case, and I have begun to speak the fitting language, repeating my conversations with the specialists as I talk to my mother, to my father, to my sisters and brothers on the telephone late into the night. I tell them all about Elijah's tests and Elijah's medications. I tell them all about the biology of epilepsy.
"He's taking thirty milligrams of phenobarbital each day. The phenobarbital stops the unregulated electrical discharge."
But as I speak of Elijah's brain and of its unregulated activity, I drift beneath the surface of side effects and pharmaceutical warnings. I strain beyond the MRI, the CT scan, and the EEC. Beyond the frame in which I'm to contain him. Beyond the frame in which I'm to contain myself too. Untethered in another region, I must be careful what I say. Be careful what you say in this timeless hour! Be careful of the crises and the impending departures. Be careful of the flowers and how you speak of them. Be careful, for the body must bear each uninvited blossom until the body dies. Be careful, for in the telling, you forge the essence of a life.
All the while on the telephone, I'm in my undercurrent thinking, alone with the questions that I would like to put to Elijah. Is a seizure a flower? Is it a thorn sticking in the mind? Does it hurt? Is it color? Is it a long journey? Is it the deepest of isolations, like a solitary poppy, emerging, orange and paper thin, in the quiet garden?
I would put these questions to him, but Elijah is sleeping in the bedroom in barbiturate sedation. He is sleeping as my voice grows hoarse with each telephone conversation. He is sleeping when I'm cooking dinner. He is sleeping when it's time to eat. He is sleeping whenever my in-laws stop by for a visit. He sleeps and sleeps, and when he does awaken, Elijah is entirely stripped of his monosyllables.
He used to say "ba" for big and "dee" for tree. He toddled around outdoors and laughed at gusts of wind. "Ba...dee!" he'd exclaim, looking up at the whooshing branches of a tree. Then he'd giggle gleefully, squat down, and return to his stone investigations. So busy, so very busy, with all the stony objects. Picking them up, one by one, examining their every contour. Then grasping firmly with his two small hands, he'd rock the object back and forth, back and forth, two times, maybe three. Then toss it aside. Systematically.
Elijah would repeat this game, picking up the next stone and running it through his investigative protocol, doing it meticulously, as if he could get to the end of them all. As if he could count every single stone there is in the wide world. As if infinity did not exist. "The limits of my language mean the limits of my world," writes Ludwig Wittgenstein.' Wittgenstein, the Austrian philosopher, did not presume infinity when it came to the objects. To presume this, he felt, was a logical failing. For Elijah, each stone he chose was utterly singular. Each stone was silent. Each stone was something he did not have a word for. A compelling investigation conducted according to the strict routine of back and forth, back and forth, two or three times. Did he memorize each contour? Did he note the shade of color? Did he absorb each and every case? "The world is all that is the case," says Wittgenstein.2 Elijah was thoroughly taken up with the stones, with each and every case, squatting silently like a small frog beside the gurgling stream, squatting with all the objects beneath the high whooshing in the trees.
But now it's winter, and Elijah and I don't go outside anymore. We don't go to look for the wizards or to stare into the coals of their reliable campfire. He sleeps instead. He is a medical case. Or he sits sedated on my lap, moving from one speechless emotion to the next. We live our days out together in the living room, confined to the narrow circumference of an old easy chair. Getting up, once in a while, to make circuits of the apartment. As he stumbles from room to room, moaning and crying, I follow him, my hands outstretched, blocking the sharp corners and the painful edges. Elijah is drunk on phenobarbital. Drunk and clumsy and paper-thin sad. His limbs are heavy, his central nervous system is depressed, and a bright red rash has developed on each cheek. The phenobarb rash, a mix of pharmaceutical side effect and the salt of bitter weeping.
The pinning down on the bed and the sputtering red syrup emitting from Elijah's mouth have become regular traumas in his day. If Elijah swallows too much medication, he recedes into a hypnotic state. If he swallows too little, he runs the risk of status epilepticus. He is living within a narrow window of opportunity that the anticonvulsant has afforded him.
"Not too much, not too little! Remember all the warnings!" Ben and I stridently say to one another each time we pin Elijah down and make him cry.
When using phenobarhital, call your doctor immediately if you develop a fever, a sore throat, sores in your mouth, broken blood vessels under the skin, or easy bruising or bleeding. How would a wordless toddler alert us to his symptoms? Phenobarbital may came excitement, irritability, aggression, depression, or confusion-particularly in children or adults over 60. Elijah always manages to spit the red stuff out, and each time he spits, his father and I snap at one another.
"He didn't get the full dose! Keep him down while I get the medicine bottle!"
"Does he really need more?!"
"How should I know?! It came out red everywhere! Look! It's dripping down his neck!"
"Let's try five more milligrams!"
Elijah is howling now. Symptoms of a phenobarbital overdose include difficulty breathing, back-and-forth movements of the eyes, appearance of being drunk, fast heartbeat, low body temperature, heavy sedation, coma, and death. We have become too zealous with ourselves. We are untrained for this. We fume at one another during our graceless dispensations, then Ben angrily disappears behind the office door to his undercurrent thinking, behind the sad veil of separation that has come to mean his writing.
Both of us in our undercurrent thinking, we hardly speak to one another anymore, not until it's time to give Elijah the next dose. Less serious side effects include dizziness, confusion, agitation, nightmares, nervousness, or anxiety. When Elijah has finished weeping, he goes back to his unhappy tour of all the rooms of the apartment. I follow his every move. I have become his silent shadow. No one speaks in our home anymore, as we navigate the blind corners and the sharp edges. Phenobarbital is habit forming. You can become addicted to it. This is the profit of the narrow pharmaceutical. It might erase a boy's happiness and thrust him into synthetic depression. It might destroy his liver, and with time, put cancer in his cells. "And yet... and yet...Ben and I tell ourselves, our backs against the wall, "it has put a stop to the seizures."
"Your uncle Maurice took phenobarbital most of his life," my mother says on the phone.
I never met Maurice. He died in his early twenties. He was mentally retarded, and when my mother was a girl, she helped take care of him. That's when she learned her gentle diligence, sleeping beside her little brother in the same bed at night.
"They say his seizures were due to the whooping cough. He had had a bad case when he was a baby."
"I didn't know Maurice was epileptic."
"Yes. He had seizures all his life. Mom and Dad tried everything. Medications, a special high-fat diet. They even took him to the Mayo Clinic. That was a big deal back then, the Mayo Clinic in the 1940s. The phenobarbital was rough. Maurice took high doses. By the time he reached his twenties, it had caused his gums to grow completely over his teeth."
Phenobarbital was the pioneering barbiturate of the twentieth century. Before it was first synthesized in 1912, the only sedative-hypnotic drugs humans used were opium and alcohol. The barbitals made the twentieth century the century of the tranquilizer, the century of the sleeping pill and induced, deep unconsciousness. But dangers of death and coma prompted new research and new promises: Valium, Halcion, and the benzodiazepines. These were popularly prescribed in the 1960s. Popularly prescribed for people like my mother, who had too much gentle diligence. Valium for the housewife. Valium for depression. Valium for the Catholic farm girl who left college to get married and raise six children. Soon enough, the drug ran its course in the competitive markets and became disreputable. Then it was replaced by another promise, and another one, and another one.